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Item GUID Title Image Icon Body Start Date End Date Start Time End Time Audience Moderators Speakers Session Type Sponsor File Title URL Path Published Promoted to front page
Session14 A Provider Toolkit for Recognizing and Addressing Mental Health in the Bleeding Disorders Population

The outcomes and quality of life of people bleeding disorders have greatly improved due to the access to care and evidence-based treatment protocols provided by centers of excellence. However, significant challenges remain regarding the treatment for individuals and their families experiencing emotional and behavioral problems, or mental health disorders. This dynamic session will address and provide tools for recognition of mental health disorders that may be commonly encountered in the bleeding disorders population. Additionally, the attendees will be provided with strategies for addressing how mental health disorders affect the management of individuals with bleeding disorders and their adherence to recommended treatment protocols. After completion of the session, attendees will be able to recognize three warning signs of common mental health disorders, describe three strategies for addressing mental health disorders within the hemophilia treatment center system, and recognize how mental health disorders affect adherence to recommended treatment regimens.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:15 2014 - 16:45 Physicians/Researchers, Nurses Sandy Hibner, MSN, RN, Lori Wagner, MSN, FNP-C Cathy Buranahirun, PsyD, Erin M. Hawks, Ph.D., Mina D. Nguyen-Driver, PsyD, James F. Hammel, MD, MA, MSc, FAPA /Events-Meetings/Annual-Meeting/Sessions/A-Provider-Toolkit-for-Recognizing-and-Addressing-Mental-Health-in-the-Bleeding-Disorders-Population Yes No
Session5 Accomplish More in Less Time: Setting Priorities

If you’ve ever pondered what you would do with an extra hour each day, then this session is for you. Join us as we look at how to maximize our time to maximize our effectiveness. We’ll talk about choosing high-value activities over low-value activities, which items on our ‘to do’ lists truly matter and why it’s okay to ask for help. It’s easy to let our task lists overwhelm us, but it’s just as easy to take back control and choose how we spend our time.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 10:15 2014 - 11:15 Chapter Staff Suzanne Mooney /Events-Meetings/Annual-Meeting/Sessions/Accomplish-More-in-Less-Time-Setting-Priorities Yes No
Session76 Advocacy: Future Leaders Program

Chapters, meet the Future Leaders. This session will provide an overview of NHF’s Future Leaders program, feature presentations from the Future Leaders and explain how Future Leaders can help advocacy programs in your chapter.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:00 2014 - 17:00 Chapter Staff Mary Garvey, MS Benjamin Charles, Michelle Leona Cecil, Sami Jankins, Nikole Scappe, Callie Clark, Lucas Rice, Travis Albright, Alexandra Johnson Sponsored by Bayer HealthCare /Events-Meetings/Annual-Meeting/Sessions/Advocacy-Future-Leaders-Program Yes No
Session32 Afterglow Lounge

Relax, unwind and network in a more intimate setting over light snacks and beverages.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 21:00 2014 - 23:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Social Events Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Afterglow-Lounge-1 Yes No
Session84 Afterglow Lounge

Enjoy a relaxed later evening gathering at the Washington Marriott Wardman Park as attendees unwind and network in a more intimate setting over light snacks and beverages.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 21:00 2014 - 23:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Social Events Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Afterglow-Lounge-2 Yes No
Session105 Art Stars: A Conversation About Creativity

The Art Stars panel discussion will cover clinical evidence surrounding the efficacy of art therapy in chronic conditions, unique implementations of creative success in the bleeding disorders community and an Art Stars programming overview. We’ll discuss how and why integrating art therapy as a part of your care plan can increase positive health outcomes, share personal experiences and advice for working within the creative economy and examine the impact programs like the Art Stars Exhibition & Trading Cards Series can have when used to recognize alternative versions of success--from arts and music to activism and ingenuity. You will be given examples of creative activities to try at home, an understanding of how working creatively can be sustainable, the confidence to encourage creative success, an awareness about how images are used to represent our community and how we can reclaim them for ourselves.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:15 Consumer/New Family Patrick James Lynch, BFA, Sarah Watson, MA, LLPC, Justin Levesque, BFA /Events-Meetings/Annual-Meeting/Sessions/Art-Stars-A-Conversation-About-Creativity Yes No
Session91 Ask the Experts: Inhibitors

Individuals and families with an inhibitor are encouraged to attend this interactive session. We will cover include inhibitor management, immune tolerance induction therapy and eradication of inhibitors. We will discuss the latest research findings on immune tolerance induction therapy, patients using rituximab for high-titer inhibitors, and hemophilia A and B patients with high and low titers.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 11:00 Consumer/New Family Miguel Escobar, MD, Lori Wagner, MSN, FNP-C Sponsored by Novo Nordisk /Events-Meetings/Annual-Meeting/Sessions/Ask-the-Experts-Inhibitors Yes No
Session39 ATHN Research: A Briefing for the Patient Community

More than 20,000 patients have joined in building the American Thrombosis and Hemostasis Network (ATHN) dataset, a secure HIPAA-compliant resource to support research and public health. In addition, more than 4,000 patients have shared their perceptions of care delivered through hemophilia treatment centers (HTCs). Come hear what was learned through these projects and how the results will be used to advance the science and delivery of care.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family, Chapter Staff Steven W. Pipe, MD, Ann Forsberg, MA, MPH, Diane Aschman, MS /Events-Meetings/Annual-Meeting/Sessions/ATHN-Research-A-Briefing-for-the-Patient-Community Yes No
Session27 Basics of Hemophilia

During this session we will focus on the basics of hemophilia, including how the disorder is inherited, typical symptoms to watch for and be aware of, and how to treat and manage it. With a thorough overview of the condition, you will have a better understanding of joint bleeds, the rationale for prophylaxis and practical approaches to common issues.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:45 2014 - 16:45 Consumer/New Family, Español Chris Guelcher, APRN, MS, PNP-BC Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Basics-of-Hemophilia Yes No
Session92 Building a Presence for Your Chapter

Chapters must create and capitalize on opportunities to gain a presence in our local cities and states to be recognized as important nonprofit organizations, but it’s much easier said than done. Join us to learn from three chapters how they have taken advantage of opportunities that were presented to them or created their own opportunities in their local communities to make their chapters known.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 10:30 Chapter Staff Kelli Walters, Kristi Harvey-Simi, Scott Ehnes /Events-Meetings/Annual-Meeting/Sessions/Building-a-Presence-For-Your-Chapter Yes No
Session21 Caregiver Roundtables

ROUNDTABLE #1: Partner Support: Help Me Help You - Being a caregiver is both rewarding and challenging. Being able to say, “I need this time to myself” can cause guilt, resentment and anger in both parties. During this session we will discuss the importance of “me time.” Learn from our speakers and each other in this dynamic roundtable on how to communicate your needs to your partner/children. ROUNDTABLE #2: Changing Roles: Caring for an Aging Parent – Many adults in the baby boomer generation care for an aging parent. Having to manage bleeding disorders in your home at the same time can add additional challenges and stresses. You may find yourself asking, “How can I do it all?” This interactive roundtable provides you with insight from an HTC social worker and others in the group who will share their experiences. ROUNDTABLE #3: The Empty Nester: Who am I Now that My Child Has Moved On? – Has your child graduated high school and moved on to college? Gotten a job and moved away? After you breathe your first sigh of relief, bewilderment may set in, causing you to wonder what your role and identity are now, and if you are still part of the bleeding disorders community. This roundtable will provide you with helpful input from others who are dealing with the same situation or who are experts on this topic.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:00 2014 - 16:45 Consumer/New Family Tonya Hegwood, MSW, LCSW, Sally S. Wright, MSW, LCSW, Peg Geary, MA, MBA, MPH, LCSW, CCM Roundtables /Events-Meetings/Annual-Meeting/Sessions/Caregiver-Roundtables Yes No
Session118 Case Studies on the Management of Bleeding Disorders in Challenging Situations

Participants will review three difficult cases (pediatric, young adult and geriatric)and participate in roundtable discussions to create treatment strategies.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:00 2014 - 17:00 Physical Therapists Vincent Amendolagine, PT Luke Smith, PT, DPT, Laura Hermann, MPT, Eena Kapoor, PT, DPT, Judy Kauffman, RN, MS, CPNP /Events-Meetings/Annual-Meeting/Sessions/Case-Studies-on-the-Management-of-Bleeding-Disorders-in-Challenging-Situations Yes No
Session66 Case Studies: HTC Nurses Making a Difference

During this session we will present several case studies in which HTC nurses have used new, creative and/or innovative nursing interventions that have resulted in the improvement of their patients’ condition and QOL. Both pediatric and adult cases will be discussed.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 17:00 Nurses Maria E. Santaella, MSN, RN, CPHON Jennifer Foster-Fausett, RN, BSN, Margaret Hall, RN, MSN, FNP-BC, Judy Kauffman, RN, MS, CPNP, Ellen White, RN, MSN, Andrew Wilson, RN, MSN, FNP /Events-Meetings/Annual-Meeting/Sessions/Case-Studies-HTC-Nurses-Making-a-Difference Yes No
Session47 Celebrating 20 Years of Blood Safety and the Ricky Ray Act

This plenary session will commemorate the beginning of the bleeding disorders community’s campaign to pass and fund the Ricky Ray Relief Act, which authorized a compensation program for individuals infected with HIV from blood products, and address the need for greater blood safety and blood product safety in the US.
In 1994, several members of Congress brought to the attention of Donna Shalala, then Secretary of Health and Human Services (HHS) in the Clinton Administration, their concerns regarding the impact of HIV/AIDS on men with hemophilia and their families. Secretary Shalala turned to the Institute of Medicine (IOM) for assistance and requested a study, which resulted in the IOM Report, HIV and the Blood Supply, which became our community’s call to action. We are pleased to say many of the blood safety recommendations included in the report have been implemented, resulting in a safer national blood supply.
During this session, Dana Kuhn will set the stage by presenting some of the history behind the bleeding disorders organizations’ advocacy efforts. He will be followed by Donna Shalala, now president of the University of Miami, who will discuss the public health issues related to HIV/AIDs that she faced as HHS secretary, specifically as they related to the safety of the blood supply.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 10:30 2014 - 12:00 Consumer/New Family, Chapter Staff Donna Shalala, PhD, Dana Kuhn, PhD, Michael Stoto, PhD, Bruce Lesley, Wendy Selig /Events-Meetings/Annual-Meeting/Sessions/Celebrating-20-Years-of-Blood-Safety-and-the-Ricky-Ray-Act Yes No
Session2 Chapter Leadership Reception

All chapter leaders, volunteers and staff members please join us for networking, information exchange and socializing.

Wednesday, September 17, 2014 Wednesday, September 17, 2014 2014 - 18:00 2014 - 19:30 Chapter Staff Sponsored by Pfizer Hemophilia /Events-Meetings/Annual-Meeting/Sessions/Chapter-Leadership-Reception Yes No
Session37 Chapter Roundtables

ROUNDTABLE #1: Transitioning Event Participants and Board Members Into Individual Donors – Event participants and board members support us by leveraging their networks. Event participants ask their friends and family to donate in support of their event participation. Board members share their time, energy and connections, often giving us access to people and corporations we may not otherwise be able to reach. However, these individuals don’t always support us as well. Join us as we talk about how to transition these two audiences into individual donors. ROUNDTABLE #2: Pros and Cons of the Membership Model – Our chapter membership models were created decades ago and are written into our bylaws. In some chapters, only members are allowed to vote for leadership (board members). Join us for a look at the pros and cons of this model. Learn about alternatives and how they work. ROUNDTABLE #3: Communications Strategies to Reach Beyond the Bleeding Disorders Community – Share and learn from others about how to market your image and brand to your local community. Explore opportunities already in place that you can take advantage of to get the word out and get people involved.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:15 2014 - 10:15 Chapter Staff Suzanne Mooney, Nick Parkevich, MPA, CFRE, John Indence, Keith Hudson Roundtables Sponsored by Biogen Idec /Events-Meetings/Annual-Meeting/Sessions/Chapter-Roundtables Yes No
Session6 Chapter Staff Organization Business Meeting & Luncheon

This yearly gathering of chapter staff leadership will start with a short business meeting, recognition of new EDs, and a report from the World Federation of Hemophilia.  Following the luncheon, we are pleased to have Steven W. Pipe, MD, Professor of Pediatrics and Pathology, and Director of Pediatric Hematology from the University of Michigan who will update us on new drugs in the pipeline.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 11:30 2014 - 12:45 Chapter Staff Steven W. Pipe, MD Sponsored by Hemophilia Alliance /Events-Meetings/Annual-Meeting/Sessions/Chapter-Staff-Organization-Business-Meeting-Luncheon Yes No
Session51 Clinical Management & Research Advances in Platelet Disorders

See the Medical Track for Physicians and Researchers Conference Program for details.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 11:30 2014 - 12:30 Physicians/Researchers Steven W. Pipe, MD Jorge DiPaola, MD, Michele P. Lambert, MD /Events-Meetings/Annual-Meeting/Sessions/Clinical-Management-Research-Advances-in-Platelet-Disorders Yes No
Session9 Collaborating in Care: An educational program based on the findings from the HERO (Hemophilia Experiences, Results and Opportunities) Study

With the release of the initial global and US quantitative HERO (Hemophilia Experiences, Results, and Opportunities) survey data in 2012 pointing to major gaps in education, access to comprehensive care and pain assessment, you will learn that NHF has been working on creating programs for those with bleeding disorders. The HERO Project is our latest venture, created by NHF and supported by Novo Nordisk. Learn about the available educational sessions that we have developed based on the HERO survey data, and how to schedule these sessions at your chapter's educational weekends and dinners. Learn about upcoming modules and our plans to bring you relevant programs designed for those with bleeding disorders in the next several years.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 13:00 2014 - 14:00 Chapter Staff Christa Dardaganian, MA, Jessica Morrison, MSc /Events-Meetings/Annual-Meeting/Sessions/Collaborating-in-Care-An-educational-program-based-on-the-findings-from-the-HERO-Hemophilia-Experiences-Results-and-Opportunities-Study Yes No
Session17 Collaborating in Care: Communication with Your Provider About Pain-An Educational Program Based on Findings from the HERO Study

The Hemophilia Experiences, Results and Opportunities (HERO) survey was developed to facilitate understanding of the psychological components influencing the lives of patients with hemophilia. This initiative was conducted in more than 1,200 adult and child patients across 10 countries. While many people who live with hemophilia control their condition well and lead the lives they wish to, for others the condition can pose challenges. Psychosocial issues often critically affect the lives of people with hemophilia and their families. The HERO study found that people with hemophilia and their caregivers said that bleeding that caused pain and joint damage decreased their quality of life. This session will provide resources for communicating with your provider about pain to ensure that pain associated with bleeding and joint damage is addressed adequately and appropriately.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:30 2014 - 15:30 Consumer/New Family Georgia Panopoulos, PhD, Kim Baumann, MPT /Events-Meetings/Annual-Meeting/Sessions/Collaborating-in-Care-Communication-with-Your-Provider-About-Pain-An-Educational-Program-Based-on-Findings-from-the-HERO-Study Yes No
Session40 Coping With Anxiety, Depression and Severe Stress

Everyone faces various transitional phases throughout their life, often accompanied by anxiety, stress or depression. Living with a bleeding disorder can further increase these feelings. How do you know when it’s not just sadness or typical stress? In this session we will talk about the symptoms of anxiety, depression and stress. We will provide guidance on how and when to talk about your concerns to your doctor. We will also discuss positive coping mechanisms and relaxation techniques to de-stress your life.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family Sami Jankins Peg Geary, MA, MBA, MPH, LCSW, CCM, Debbie de la Riva, MEd, LPC Sponsored by Novo Nordisk Inc. and the HERO program. /Events-Meetings/Annual-Meeting/Sessions/Coping-With-Anxiety-Depression-and-Severe-Stress Yes No
Session48 Creative Social Work Programming

Part 1: During this session, the audience will learn about a dental care program offered to consumers through one state's chapter. The audience will understand the options for setting up a dental program in conjunction with a private dental plan, including financial options and consumer eligibility guidelines. Part 2: “How von Willebrand disease Impacts the Lives of Boys and Men with this Bleeding Disorder” is the title of an educational session and dinner that was delivered by the nurse and social workers of the Louisiana Center for Bleeding and Clotting Disorders at Tulane University School of Medicine in New Orleans. Our presentation will describe this program in detail, helping you learn why outreach to this population is much needed. It will give you insights about the strategies these boys and men employ to cope with VWD. Part 3: “When the meds fail, the docs prescribe music! Music therapy for pain management.” - In this illuminating, informative and interactive session, participants will discover that the medical field is now acknowledging what we have all intuitively understood all along: music is powerful, and can be used as an effective clinical tool to manage somatic and emotional pain. Come learn why and how this old friend called music is so effective in this entertaining and empowering session. Participants will learn specific techniques they can immediately implement as well as the science behind the art of music, and why your body can’t resist it.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 11:30 2014 - 13:15 Social Workers Katie Foote, LMSW, LCSW, Megan Midura, MSW, LSW Colleen Joiner, LMSW, Sue duTreil, PhD, LCSW, Constance Thibodeaux, LCSW, BACS, Tim Ringgold, MT-BC /Events-Meetings/Annual-Meeting/Sessions/Creative-Social-Work-Programming Yes No
Session113 Crisis Management in an Ever-Changing Environment

Join us for this session in which we will delve into various types of conflicts that chapters continue to face. We will discuss how to handle these issues and create a positive front to the world when chaos is happening behind the scenes.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 12:00 2014 - 13:00 Chapter Staff Michelle Rice, Dawn Rotellini /Events-Meetings/Annual-Meeting/Sessions/Crisis-Management-in-an-Ever-Changing-Environment Yes No
Session49 Decoding Dysfunction, Part 1

This session will discuss the development and practice treatment strategies for management of common orthopedic dysfunctions related to core weakness.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 11:30 2014 - 13:15 Physical Therapists Lorraine M. Flaherty, PT Anita Davidson, PT, DPT /Events-Meetings/Annual-Meeting/Sessions/Decoding-Dysfunction-Part-2 Yes No
Session41 Decoding Dysfunction, Part 1

This session will describe the evidence-based approach to evaluate and treat common orthopedic conditions related to core weakness and discuss applications to individuals with hemophilia.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 11:15 Physical Therapists Lorraine M. Flaherty, PT Anita Davidson, PT, DPT /Events-Meetings/Annual-Meeting/Sessions/Decoding-Dysfunction-Part-1 Yes No
Session57 Diagnostic and Management Dilemmas in VWD

See the Medical Track for Physicians and Researchers Conference Program for details.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 15:00 Physicians/Researchers Leslie J. Raffini, MD Shannon L. Carpenter, MD, MS, Peter A. Kouides, MD /Events-Meetings/Annual-Meeting/Sessions/Diagnostic-and-Management-Dilemmas-in-VWD Yes No
Session93 Diagnostic Dilemmas in VWD

In this session the NHLBI guidelines for diagnosis and treatment of VWD will be reviewed. Discussion of diagnostic dilemmas will follow a case study format and will cover some challenging cases that fall outside of published guidelines.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 11:15 Nurses Judy Kauffman, RN, MS, CPNP Shannon L. Carpenter, MD, MS, Mary Lesh, PNP /Events-Meetings/Annual-Meeting/Sessions/Diagnostic-Dilemmas-in-VWD Yes No
Session63 Embracing Your Inner Geezer

This session will focus on health issues that affect older hemophilia patients and the evolving nature of comprehensive care. Topics will include cardiovascular disease; rheumatologic diseases such as gout, arthritis and bone density; cancer screening and orthopedic referrals. By the end of the session you will learn the symptoms of gout, heart disease and other diseases, and how your HTC can help you get the resources you need.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 14:00 2014 - 15:30 Consumer/New Family Randall Curtis, MBA Craig M. Kessler, MD, MACP, Patrick F. Fogarty, MD, Marla Feinstein /Events-Meetings/Annual-Meeting/Sessions/Embracing-Your-Inner-Geezer Yes No
Session15 Evaluation, Prescription, and Fabrication of Ankle/Foot Orthoses for Children and Adults in Persons with Hemophilia (Materials included)

This session will review the developing foot through common and complex adult foot/ankle problems in people with hemophilia. Common ankle/foot orthoses will be reviewed for the pediatric and adult population. We will address strategies for correction and/or accommodation for common foot/ankle problems, and a lab with hands-on fabrication of a simple insert using posting and wedging materials will occur on site.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:15 2014 - 16:45 Physical Therapists Joel Lee, MPT Nicole Hroma, PT, Dave Oleson, PT /Events-Meetings/Annual-Meeting/Sessions/Evaluation-Prescription-and-Fabrication-of-Ankle/Foot-Orthoses-for-Children-and-Adults-in-Persons-with-Hemophilia-Materials-included Yes No
Session52 Exhibit Hall Lunch

Join us in the Exhibit Hall for lunch and enjoy the 66th Annual Meeting's array of exhibits.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 12:00 2014 - 13:30 Consumer/New Family, Chapter Staff /Events-Meetings/Annual-Meeting/Sessions/Exhibit-Hall-Lunch Yes No
Session29 Exhibit Hall Opening Reception

The opening reception is the place to be on Thursday night! Meet other attendees in the Exhibit Hall for refreshments and entertainment. Get your first look at all of the interactive exhibit displays.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 18:30 2014 - 21:30 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists /Events-Meetings/Annual-Meeting/Sessions/Exhibit-Hall-Opening-Reception Yes No
Session112 Fathers and Daughters

Fathers with hemophilia have a special perspective on bleeding disorders that can be invaluable to their carrier daughters. This session will discuss how fathers can prepare to discuss disclosing carrier status to their daughters, the importance of testing and how to deal with feelings of guilt. This session will show you the benefit of having an open and honest dialogue with your daughter about your bleeding disorder.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 12:15 2014 - 13:15 Consumer/New Family, Español Mina Nguyen-Driver, PsyD Guillermo Campillo, James DeFilippi, Dwayne Graham, Dan Maher /Events-Meetings/Annual-Meeting/Sessions/Fathers-and-Daughters Yes No
Session46 Field Trip Friday, September 19, 2014 Friday, September 19, 2014 2014 - 10:00 2014 - 15:00 Teens /Events-Meetings/Annual-Meeting/Sessions/Field-Trip Yes No
Session18 Fighting the Stigma of Disability

This session will focus on the way society can label people with disabilities and how that can affect you. We will discuss navigating expectations when your disability may not be obvious, coping with personal limitations, redefining what the term “disability” means and the change in how society views bleeding disorders. You will leave this session empowered to accept your disability and create a greater sense of self.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:30 2014 - 15:30 Consumer/New Family, Español Sami Jankins Sara Rakestraw, MSW, LSW, LISW, Garrie Barnes, Lynn Erickson /Events-Meetings/Annual-Meeting/Sessions/Fighting-the-Stigma-of-Disability Yes No
Session127 Final Night Party

Join us as we blast off to the Smithsonian National Air and Space Museum! The evening starts at 5:00pm for dinner in the Marriott Wardman Park. After, we will board buses and head to the museum for a chance to explore the history of American aviation from the Wright Brothers Flyer to the Apollo 11 Command Module Columbia.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 17:00 2014 - 21:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Sponsored by Biogen Idec /Events-Meetings/Annual-Meeting/Sessions/Final-Night-Party Yes No
Session94 Fit Living : Exercise and Wellness for Adult Men

Men, here’s a session just for you to find your passion and achieve a healthy lifestyle! Learn how to create a healthy and supportive environment, set realistic goals, eat a healthy nutrient-rich diet, create a cardiovascular base and improve strength, flexibility and balance. A unique approach to health and wellness you won't want to miss!

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family Matt Shade, Stacie Akins, PT, ` Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Fit-Living-Exercise-and-Wellness-for-Adult-Men Yes No
Session87 Fit 'n' Fun Walk/Run

Start the day off with some excerise! The Physical Therapy Working Group will lead participants in a series of stretches, then guide runners and walkers in a route around Washington, DC.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 08:00 2014 - 09:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists /Events-Meetings/Annual-Meeting/Sessions/Fit-n-Fun-Walk-Run Yes No
Session106 From Prehab to Rehab Lab

This session will cover common nonsurgical sports injuries in the general population, including repetitive overuse syndromes, sprains, strains, joint weakness or laxity, impaired motor proficiency and proprioception or motor control. We will discuss examination skills, including ligamentous tests and functional tests of strength. We will also introduce strategies for rehabilitation of common sports-related impairments, pre-participation screening for vulnerability to injury, and pre-habilitation strategies to prepare people with bleeding disorders for a physical activity or sport. There will be a 30-minute Q&A at the end of the session.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:15 Physical Therapists Kim Baumann, MPT Jon Rose, PT, SCS, MS, ATC /Events-Meetings/Annual-Meeting/Sessions/From-Prehab-to-Rehab-Lab Yes No
Session64 Go to Dinner, Go to Jail? The Do's and Don'ts of Pharma and Homecare Relationships

Whether you or your child has a bleeding disorder, it comes with a great responsibility: to get the best care possible. This interactive session will give you information on the sometimes-confusing acronyms -- HTC, 340B, HRSA, etc. -- which can be a roadblock to getting that care. We will also cover the critical questions to ask when choosing a factor provider. Finally, we will address the responsibility that parents, patients, pharma and homecare reps have in following the rules and laws that affect us all.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 14:00 2014 - 15:00 Consumer/New Family, Español Dawn Rotellini, Michelle Rice /Events-Meetings/Annual-Meeting/Sessions/Go-to-Dinner-Go-to-Jail-The-Dos-and-Donts-of-Pharma-and-Homecare-Relationships Yes No
Session121 Healthy Cooking: It’s Easier Than You Think!

This session is designed to show you quick and easy ways to eat in a more healthful manner. You will also walk away with ideas on menu planning, and where to find delicious and nutritious recipes.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:15 2014 - 16:45 Consumer/New Family Tina Willis, MA, RD /Events-Meetings/Annual-Meeting/Sessions/Healthy-Cooking-Its-Easier-Than-You-Think Yes No
Session67 Hemophilia Joint Health Score (HJHS)

This session is designed for physical therapists to review and instruct in the clinical application of the Hemophilia Joint Health Score (HJHS). This will be an interactive session including opportunities to practice evaluating and scoring elbow, knee and ankle joints using the tool. Questions and active discussion will be encouraged.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 17:00 Physical Therapists Heidi Purrington, PT Sharon Funk, PT, DPT /Events-Meetings/Annual-Meeting/Sessions/Hemophilia-Joint-Health-Score-HJHS Yes No
Session19 Hepatitis C Updates

This session will focus on liver disease in people with hemophilia. We will discuss management of cirrhosis and its complications, coordinating liver care with your HTC and liver transplants. We will also discuss revolutionary developments in hepatitis C therapies, such as late-breaking drug discoveries, and what is in the pipeline for the future.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:30 2014 - 15:30 Consumer/New Family Randall Curtis, MBA Dilip K. Moonka, MD, Bruce A. Luxon, MD, PhD /Events-Meetings/Annual-Meeting/Sessions/Hepatitis-C-Updates Yes No
Session50 Hepatitis Update

This session will focus on the natural history of the disease, the diagnosis and staging of the severity of the liver damage, available treatment options and the expected outcomes. We will discuss the role and importance of early diagnosis and treatment, the stigma that patients with hepatitis face and the importance of patient education on the disease process.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 11:30 2014 - 13:15 Nurses Krishna Cannon, MBA, BSN, RN, CCRP Craig M. Kessler, MD, MACP, Bruce Luxon, MD, PhD, Dilip K. Moonka, MD /Events-Meetings/Annual-Meeting/Sessions/Hepatitis-Update Yes No
Session119 High-Resolution Ultrasound: Personalized Musculoskeletal Care through Rapid Bleed Detection and Possibilities of Stratification of Physical Therapy Interventions

This session will focus on recognizing that point-of-care musculoskeletal ultrasound is a highly sensitive tool for the diagnosis of soft tissue injury and joint bleeds. A review of joint anatomy and joint structures will be presented, and the pathaphysiological changes in the development of hemophilic arthropathy will be reviewed. Treatment options for hemoarthrosis and joint pain will be presented. Physical therapists will also discuss interventions to be used at the various stages of hemophilic arthropathy to improve joint health.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:00 2014 - 17:00 Nurses Glen Roy, RN, Jackie Thompson, RN Annette von Drygalski, MD, Ruth Mulvany, DPT /Events-Meetings/Annual-Meeting/Sessions/High-Resolution-Ultrasound-Personalized-Musculoskeletal-Care-through-Rapid-Bleed-Detection-and-Possibilities-of-Stratification-of-Physical-Therapy-Interventions Yes No
Session74 HIV Treatment Updates

During this session we will focus on the latest updates in HIV therapy. We will discuss the new classes of drugs for HIV and their side effects. By the end of the session you will learn what HIV treatments are available and the importance of using a team of specialists to find the right therapy for you.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:45 2014 - 16:45 Consumer/New Family Randall Curtis, MBA B. Sharmila Mohanraj, MD, Gayle P. Balba, MD /Events-Meetings/Annual-Meeting/Sessions/HIV-Treatment-Updates Yes No
Session99 How to Create a Spanish Language Program

The Hispanic community is growing by leaps and bounds across the country. Find out from these chapter staff why they prioritized creating programs for the Spanish-speaking community. Learn the “how to’s” and the “what not to do’s” from these chapter experts.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 10:45 2014 - 11:45 Chapter Staff Kelli Walters, Kevin Sorge, Nooshin Kosar, Brenden Hayes, Melissa Compton, Debbi Adamkin /Events-Meetings/Annual-Meeting/Sessions/How-to-Create-a-Spanish-Language-Program Yes No
Session58 How to Create an Efficient Budget in Excel

Would you like to learn some tips and tricks for budgeting in Excel? Join us for this interactive session with a panel of chapter executive directors who have had issues, learned better ways and are conquering their budgets. We will work with Quickbooks and use a development plan as the basis for experimenting.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 14:30 Chapter Staff Michael Craciunoiu, Karen Krzmarzick, MA, CAE /Events-Meetings/Annual-Meeting/Sessions/How-to-Create-an-Efficient-Budget-in-Excel Yes No
Session7 HTC Staff Meeting

This meeting is open to all staff of federally funded hemophilia treatment centers and will focus on issues related to federal funding, policies, the Centers for Disease Control and Prevention (CDC) surveillance activities, and the Maternal and Child Health Bureau (MCHB) programs.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 12:00 2014 - 14:00 Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists, Nurses, Physical Therapists, Social Workers, Pharmacists /Events-Meetings/Annual-Meeting/Sessions/HTC-Staff-Meeting Yes No
Session36 Ice Breaker and Instagram Challenge Friday, September 19, 2014 Friday, September 19, 2014 2014 - 08:30 2014 - 09:30 Teens Michelle Finnerty , Amanda Lee /Events-Meetings/Annual-Meeting/Sessions/Ice-Breaker-and-Instagram-Challenge Yes No
Session111 In Case of Emergency: Disaster Preparedness

This session will feature speakers from chapters and other health organizations who have developed disaster/emergency preparedness plans. They will discuss how their organization designed, implemented and communicated their plans to their community. A Q & A will follow where you can learn tips, resources and steps to take to be prepared as possible for a disaster or emergency.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:45 2014 - 13:15 Consumer/New Family Heidi Lane, PT, PDT, PCS, Sue du Treil, PhD, LCSW, Maria Manahan, Parham Jaberi, MD, MPH /Events-Meetings/Annual-Meeting/Sessions/In-Case-of-Emergency-Disaster-Preparedness Yes No
Session86 Industry Symposium I: 360° of Inspiration

Please join us for a morning of inspiration. This event will highlight innovators from the hemophilia community who will share stories of the successes they have worked hard to achieve. These range from personal growth and perseverence to the creation of a monitoring tool for hemophilia treatment. Breakfast will be served.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 07:00 2014 - 09:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Aaron Craig, Marc Lara, Miguel Lara, Vaughn Ripley Industry Symposia Developed and sponsored by Biogen Idec /Events-Meetings/Annual-Meeting/Sessions/Industry-Symposium-I-360-of-Inspiration Yes No
Session34 Industry Symposium I: Step It Up! Being More Active With Hemophilia

Being active is key, especially when you have hemophilia. During this engaging symposium, we’ll discuss ways patients can stay active and reach their personal goals while being protected. This session will also teach you how to communicate better with your doctor, patient or loved one. How? By having Constructive Conversations. Hungry for more? Just stop by. Breakfast will be served.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 07:00 2014 - 09:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Patrick Torrey Myles Ganley, J. Nathan Hagstrom, MD, MHCM, Bruce Berger, PhD Industry Symposia Developed and sponsored by Pfizer Hemophilia /Events-Meetings/Annual-Meeting/Sessions/Industry-Symposium-I-Step-It-Up-Being-More-Active-With-Hemophilia Yes No
Session35 Industry Symposium II: If It Matters to You, It Matters to Us

Grab some coffee, enjoy breakfast and join a conversation about issues that matter most to you. At the Bayer HealthCare Breakfast Symposium, together we’ll address scientific information, give you a sneak peek into live events tailored to address real-life topics like career planning and goal-setting, and provide information on how Bayer can help make sense of your health insurance benefits and coverage. Breakfast will be served.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 07:00 2014 - 09:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Industry Symposia Developed and sponsored by Bayer HealthCare /Events-Meetings/Annual-Meeting/Sessions/Industry%20Symposium%20II-If-It-Matters-to-You-It-Matters-to-Us Yes No
Session129 Industry Symposium II: Understanding PK Guided Prophylaxis Treatment with ADVATE

This symposium will address differing pharmacokinetics (PK) for people with hemophilia and its impact on factor levels. Attendees will learn about how understanding pharmacokinetics can provide important information toward determining the appropriate prophylaxis dose for each patient on ADVATE. Breakfast will be served.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 07:00 2014 - 09:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Tammuella Singleton, MD, Ben Guth Industry Symposia Developed and sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Industry-Symposium-II-Understanding-PK-Guided-Prophylaxis-Treatment-with-ADVATE Yes No
Session85 Industry Symposium III: Clinical Considerations in Hemophilia Care: An Interactive Case-Based Session for Nurses

This symposium focuses on the key considerations for nurses in managing patients with hemophilia. It will include include both a panel discussion and interactive case-based exercises. During the case-based exercises, the attendees will be asked to use an audience response system (ARS) to provide feedback on patient cases that were developed in collaboration with the faculty. These cases will cover an array of patient types and scenarios that nurses are likely to manage in real world practice. The goal of this exercise is to help nurses identify patient-specific considerations, such as aging, bleeding phenotype, or comorbid disease, that can impact therapeutic and clinical management. Attendees will be seated geographically by region, and one iPad will be assigned per table for ARS interactions, thus facilitating table discussion during the interactive case studies and Q&A session. Breakfast will be served.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 07:00 2014 - 09:00 Nurses Sally McAlister, BSN Charmaine Biega, RN, Jennifer Maahs, MSN, PNP, Kim Schafer, RN, MSN Industry Symposia Developed and sponsored by Biogen Idec /Events-Meetings/Annual-Meeting/Sessions/Industry-Symposium-III-Clinical-Considerations-in-Hemophilia-Care-An-Interactive-Case-based-Session-for-Nurses Yes No
Session33 Industry Symposium III: Pain Management and Increasing Functional Ability for Patients with Hemophilia with Inhibitors

Hemophilia necessitates ongoing medical care, and this fact is magnified in patients who have developed inhibitors. Because bypassing agents, which are used when patients have inhibitors, are generally less effective than standard factor concentrates, these patients have an increased risk of uncontrolled bleeding and of progressive joint disease. Moreover, this population of patients has a need for early intervention during a bleeding event to improve the odds of bleeding control. Not surprisingly, patients with hemophilia with inhibitors struggle with pain management. Thus, patients with hemophilia with inhibitors have an extra layer of complexity added to the management of their condition, requiring special attention from nurses and the rest of the team at hemophilia treatment centers (HTCs).

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 07:00 2014 - 08:45 Nurses Michelle Witkop, DNP, FNP-BC, Kim Baumann, MPT, Georgia Panopoulos, PhD , Timothy Ringgold, MT-BC, Michael Uttecht, PT Industry Symposia This activity is supported by an educational grant from Novo Nordisk Inc. /Events-Meetings/Annual-Meeting/Sessions/Industry-Symposium-III-Pain-Management-and-Increasing-Functional-Ability-for-Patients-with-Hemophilia-with-Inhibitors Yes No
Session68 Instagram Challenge Wrap Up Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:00 2014 - 17:00 Teens Michelle Finnerty , Amanda Lee /Events-Meetings/Annual-Meeting/Sessions/Instagram-Challenge-Wrap-Up Yes No
Session23 Is That OK? Ethical Dilemmas in Our Community

This ethics session will offer a multidisciplinary panel discussion of ethical situations within our community. In addition, the session will provide the participants an understanding of basic ethical principles through case discussions.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:30 2014 - 16:45 Consumer/New Family Kristie Ostash, MD, Sabrina Farina, LMSW Jocelyn Bessette Gorlin, RN, MSN, CPNP, Michael Cole, PhD, Michael Drab, Michael Tarantino, MD /Events-Meetings/Annual-Meeting/Sessions/Is-That-OK-Ethical-Dilemmas-in-Our-Community Yes No
Session22 Manufacturer Funding Requests: Making the Partnership Work for You

Join us for this interactive session in which we will hear from representatives of the manufacturers of factor products. Learn about the changes to their online funding systems, what they can and cannot fund, what pitfalls you should avoid, and how to maximize your funding requests and needs.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:15 2014 - 16:45 Chapter Staff Michelle Rice, Dawn Rotellini Representatives from Bayer HealthCare, Baxter International Inc., Biogen Idec, CSL Behring, Emergent Biosolutions, Grifols, Kedrion Biopharma, Novo Nordisk, Octapharma and Pfizer Hemophilia /Events-Meetings/Annual-Meeting/Sessions/Manufacturer-Funding-Requests-Making-the-Partnership-Work-for-You Yes No
Session88 Medical and Scientific Advisory Council (MASAC) Meeting

See the Medical Track for Physicians and Researchers Conference Program for details.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 08:00 2014 - 18:00 Physicians/Researchers /Events-Meetings/Annual-Meeting/Sessions/Medical-and-Scientific-Advisory-Council-MASAC-Meeting Yes No
Session122 Meet the 2014 Judith Graham Pool Postdoctoral Research Fellows

This session will provide an opportunity for chapter staff to learn more about how NHF is supporting cutting-edge research. Current JGP Fellows will introduce themselves and talk briefly about why they applied to the program, their research project, and the impact the Fellowship has had on their career. The remainder of the session will be open for your questions.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:15 2014 - 16:15 Chapter Staff Angela Goldstein Hongxia Fu, PhD, Ji-Yoon Noh, PhD, Sudharsan Parthasarathy, PhD, Angelina Wang /Events-Meetings/Annual-Meeting/Sessions/Meet-the-2014-Judith-Graham-Pool-Postdoctoral-Research-Fellows Yes No
Session114 Men with VWD in the Hemophilia World

During this session we will focus on issues relevant to boys and men with von Willebrand disease (VWD). We will discuss coping with VWD in a community where hemophilia is the predominant bleeding disorder; differences for those who are mild, moderate or severe; important reasons for boys and men to get diagnosed and learn about self-care. You will learn how to face common challenges for boys and men with VWD, the importance of diagnosis and tips for self-care.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 12:00 2014 - 13:00 Consumer/New Family Michael Wang, MD, Janusz Golec, James F. Hammel, MD, MA, MSc, FAPA, Edward Kuebler, LCSW Sponsored by CSL Behring /Events-Meetings/Annual-Meeting/Sessions/Men-with-VWD-in-the-Hemophilia-World Yes No
Session69 Music Therapy for Pain Management

When the meds fail, the docs prescribe music! In this illuminating, informative, and interactive session, participants will discover that the medical field is now acknowledging what we have all intuitively understood all along--music is powerful and can be used as an effective clinical tool to manage physical and emotional pain. Come learn why and how this old friend called music is so effective in this fun, entertaining and empowering session. Participants will learn specific techniques they can immediately implement as well as the science behind the art of music, and why your body can’t resist it.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 16:30 Consumer/New Family, Español Tim Ringgold, MT-BC /Events-Meetings/Annual-Meeting/Sessions/Music-Therapy-for-Pain-Management Yes No
Session100 Music Therapy for Pain Management for Teens

Whether its rap or country or classical, music is part of everyone’s life. But did you know that music can help you deal with pain? Music therapist Tim Ringgold will guide you through techniques that can help you deal with physical pain by using your innate ability to make music.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 10:45 2014 - 12:00 Teens Tim Ringgold, MT-BC /Events-Meetings/Annual-Meeting/Sessions/Music-Therapy-for-Pain-Management-for-Teens Yes No
Session128 National Hemophilia Foundation Board of Directors Meeting

Open to all.

Sunday, September 21, 2014 Sunday, September 21, 2014 2014 - 07:00 2014 - 13:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists /Events-Meetings/Annual-Meeting/Sessions/National-Hemophilia-Foundation-Board-of-Directors-Meeting Yes No
Session8 New Families Reception

If you're new to the world of bleeding disorders, this reception is the place to be. Come meet new parents and participants, learn, socialize and have fun!

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 12:00 2014 - 13:00 Consumer/New Family Sponsored by Biogen Idec /Events-Meetings/Annual-Meeting/Sessions/New-Families-Reception Yes No
Session81 New Horizons: Update on Emerging Therapies

This session will present an update on emerging therapies in hemophilia care. Clinical trial data of new hemostatic agents will be presented. A review of current treatment strategies as well as potential new paradigms in hemophilia care will be discussed. This session will provide the hemophilia treatment center nurse with education on mechanisms of action of new hemostatic agents and potential implications of care for both the pediatric and adult hemophilia populations.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 17:00 2014 - 18:00 Nurses Mary Lesh, PNP Steven W. Pipe, MD /Events-Meetings/Annual-Meeting/Sessions/New-Horizons-Update-on-Emerging-Therapies Yes No
Session4 NHF Chapter Update

This session will provide updates from NHF CEO Val D. Bias and NHF staff.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 09:00 2014 - 10:00 Chapter Staff Val D. Bias, NHF staff, Alan Weill /Events-Meetings/Annual-Meeting/Sessions/NHF-Chapter-Update Yes No
Session117 NHF Official Annual Meeting and Awards Luncheon

At this luncheon for all Annual Meeting attendees, special recognition is given to the remarkable and distinguished individuals among our healthcare providers and chapter staff volunteers, and for best practices in the bleeding disorders community. Join us to honor our Awards of Excellence winners, including Physician, Nurse, Physical Therapist and Social Worker of the Year. Watch short videos on positive contributions to the bleeding disorders community this past year. In addition, the Awards of Distinction will honor the highest caliber chapter programs in health education, outreach, communication and collaboration.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 13:30 2014 - 15:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Social Events Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/NHF-Official-Annual-Meeting-and-Awards-Luncheon Yes No
Session53 NHF Research Fellows Luncheon

See the Medical Track for Physicians and Researchers Conference Program for details.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 12:30 2014 - 13:30 Physicians/Researchers /Events-Meetings/Annual-Meeting/Sessions/NHF-Research-Fellows-Luncheon Yes No
Session20 NHF's Victory for Women: Act II: Women and Aging

During this session you will learn what options exist for women with bleeding disorders in regard to various hormone therapies and menopausal challenges. You will also learn recommended preventive health procedures for women over 40 and what aspects of self-care should change as women with bleeding disorders enter a new phase of life.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:30 2014 - 15:30 Consumer/New Family, Victory for Women Danna Merritt, MSW, LMSW Lisa Perriera, MD, MPH, Angela Lambing, MSN, NP-C Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/NHFs-Victory-for-Women-Act-II-Women-and-Aging Yes No
Session62 NHF's Victory for Women: How Our Stories Shape Our Lives

As we talk about our lives to others, we develop our story. Life stories are important oral histories of the ups and downs we’ve had. In this session you will learn about the benefits of telling our stories, and also the roadblocks we might create by the way we share our past experiences. Three panelists will share their stories and the different ways they’ve found to express them – not just verbally, but also through working with others, creating artwork and writing.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 15:00 Consumer/New Family, Victory for Women Patrice Thomas, MS, MSW Lisa Orbe-Austin, PhD, Sami Jankins, Sarah Watson, MA, LLPC /Events-Meetings/Annual-Meeting/Sessions/NHFs-Victory-for-Women-How-Our-Stories-Shape-Our-Lives Yes No
Session116 NHF's Victory for Women: I’ve Got Something to Tell You: Relationships and Disclosure

When is the right time to disclose your bleeding disorder to a friend, co-worker or potential romantic partner? This session will use scripted scenarios and participant’s experiences to discover ways that disclosure can be a positive experience. By the end of this session you will have techniques you can use when contemplating when and who to disclose to, and an understanding of the importance of privacy and protecting your medical information.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 12:00 2014 - 13:00 Consumer/New Family Katherine Rosenblatt, LMSW, Nikole Scappe /Events-Meetings/Annual-Meeting/Sessions/NHFs-Victory-for-Women-Ive-Got-Something-to-Tell-You-Relationships-and-Disclosure Yes No
Session77 NHF's Victory for Women: One Day at a Time: Women Thriving with Bleeding Disorders

During this session we will discuss stress and coping strategies for both women with bleeding disorders and women who are caregivers; how different bleeding disorders pose different challenges and new methods for coping and addressing stress issues. We will provide information on what works and doesn’t work in dealing with life stressors for each person through interactive discussions; how to be proactive and practice self-care techniques regularly, so that we feel better equipped to cope with life’s challenges. This session will impart a greater awareness of your methods of coping with stress and whether they are helpful or hindrances. We will introduce you to new ways to manage stress in your life including yoga, guided meditation and aromatherapy.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:00 2014 - 17:30 Consumer/New Family, Victory for Women Amanda Hardaway, ERYT 500hr /Events-Meetings/Annual-Meeting/Sessions/NHFs-Victory-for-Women-One-Day-at-a-Time-Women-Thriving-with-Bleeding-Disorders Yes No
Session90 Not Another Medical Bill: Addressing Your Insurance Claims and the Importance Of Advocacy

In this interactive session, you will learn best practices for documenting claims issues that you may have with your insurance company. We will talk about the importance of understanding and following through with the appeals and grievance processes, and how documenting your case from the beginning will help you in this process. Finally, we will share some information about the various issues and trends we are seeing on both the state and on the federal level that may affect the bleeding disorders community and how you can get involved through your chapter to address some of these issues.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 11:30 Consumer/New Family Mary Garvey, MS, Marla Feinstein, Nicole Quinn-Gato, JD, Michelle Rice /Events-Meetings/Annual-Meeting/Sessions/Not-Another-Medical-Bill-Addressing-Your-Insurance-Claims-and-the-Importance-Of-Advocacy Yes No
Session59 Nurses Luncheon

Please join the Nursing Working Group as we spend time to gather with old friends and welcome new ones. Susan Hunter, RN, BSN, will moderate presentations on Nursing Excellence Fellowship recipients Kimberly Jacobson, RN, CNP and Michelle Witkop, DNP, FNP-BC. The luncheon will conclude with the announcement and celebration of the NHF Nurse of the Year award.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 14:45 Nurses Susan Hunter, RN, BSN, Kimberly Jacobson, RN, CNP, Michelle Witkop, DNP, FNP-BC /Events-Meetings/Annual-Meeting/Sessions/Nurses-Luncheon Yes No
Session42 One in a Million: Rare Bleeding Disorders

Being one in a million may mean a lack of resources or information on your condition. Join us for this session in which we will uncover some of the rarer bleeding disorders. We will discuss the signs, symptoms and mechanics of the disorders; available treatments and some of the issues faced by patients.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family, Español Trinh Nguyen, DO /Events-Meetings/Annual-Meeting/Sessions/One-in-a-Million-Rare-Bleeding-Disorders Yes No
Session28 Opening Session

Kick off the Annual Meeting with an inspirational address by NHF CEO Val D. Bias as he shares his vision for the future of the organization. There will also be a special performance by comedian and juggler Marcus Monroe.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 17:00 2014 - 18:30 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists /Events-Meetings/Annual-Meeting/Sessions/Opening-Session Yes No
Session73 Oral Presentations from the Top Research Poster Abstracts

See the Medical Track for Physicians and Researchers Conference Program for details.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:15 2014 - 17:15 Physicians/Researchers Marion Koerper, MD Kate Colbath, Lorraine M. Flaherty, PT, Guy Young, MD, Alessandro Gringeri, MD, David Cooper, MD, MBA , Allison Paroskie, MD, MSCI /Events-Meetings/Annual-Meeting/Sessions/Oral-Presentations-from-the-Top-Research-Poster-Abstracts Yes No
Session11 Orientation & Welcome

Is this your first time attending an NHF Annual Meeting? Please join us as we introduce you to NHF and provide an overview of this three-day event. We will offer suggestions for how to get the most out of the conference, highlight session options, describe the Exhibit Hall and social opportunities, and explain where to go if help is needed. Get to know other newcomers and our host chapters, Hemophilia of the Capital Area, Hemophilia Foundation of Maryland, and the Virginia Hemophilia Foundation. We look forward to greeting you at your first exciting session of the 66th Annual Meeting!

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 13:30 2014 - 14:30 Consumer/New Family Michelle Witkop, DNP, FNP-BC, Lisa Maxwell, Debbie de la Riva, MEd, LPC /Events-Meetings/Annual-Meeting/Sessions/Orientation-Welcome Yes No
Session107 Overcoming the Odds

During this session we will learn about hemophilia care in other parts of the world. The discussion will be based on information from WFH's Twinning Program: the collaboration of hemophilia treatment centers (HTCs) within the US and their partner HTCs in other countries. The presentation will be viewed through the eyes of a health care provider and a mother who has a child with hemophilia. Through the dedication of parents, patients and providers, the participants will be able to identify what contributes to a successful program as well as what challenges exist.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:15 Nurses Arnette A. Hams, RN, BS, OCN Megan Adediran, Jennifer Maahs, MSN, PNP /Events-Meetings/Annual-Meeting/Sessions/Overcoming-the-Odds Yes No
Session82 Pain in the Brain

During this session participants will be able to describe current evidence related to the efficacy of cognitive therapy and mindfulness based stress reduction (MBSR) in the management of pain. We will also discuss strategies for using these approaches as adjunct interventions in pain management.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 17:00 2014 - 18:00 Physical Therapists Marc Gilgannon, PT Heather Huszti, PhD /Events-Meetings/Annual-Meeting/Sessions/Pain-in-the-Brain Yes No
Session78 Peer Supervision (Closed Session)

During this closed session on peer supervision, we will offer social workers the opportunity to hear from one another on a national level as to the ethical issues we are presented with on a routine basis in our role as healthcare professionals. Learn about basic ethical principles and resources available to support you as you navigate your way through case discussions.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:30 2014 - 17:30 Social Workers Sabrina Farina, LMSW Dawn von Mayrhauser, MSW, LCSW, Nancy G. Hatcher, MSW, LCSW, Michael Cole, PhD, Michael Drab, Jocelyn Bessette Gorlin, RN, MSN, CPNP, Michael Tarantino, MD, Kristie Ostash, MD /Events-Meetings/Annual-Meeting/Sessions/Peer-Supervision-Closed-Session Yes No
Session60 Physical Therapists Luncheon

The Physical Therapy Working Group will provide updated information on projects grants and membership. Attendees will participate in a focus group discussion related to contemporary concerns.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 14:45 Physical Therapists Grace Hernandez, PT Sherry Herman-Hilker, PT, MS /Events-Meetings/Annual-Meeting/Sessions/Physical-Therapists-Luncheon Yes No
Session43 Platelet Disorders

During this session we will discuss the characteristics of primary hemostatic disorders and how they are different from coagulation factor deficiencies. A brief case history will highlight the role of electron microscopy in the diagnosis of storage pool deficiencies. Electron microscopy will then be discussed in detail, followed by the treatment options available for platelet dysfunction.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:00 2014 - 11:15 Physicians/Researchers, Nurses Sue Purdie, RN, CPHON Amy Dunn, MD, William T. Gunning III, PhD, FMSA, Diane Nugent, MD /Events-Meetings/Annual-Meeting/Sessions/Platelet-Disorders Yes No
Session10 Platinum Preview Lounge

Get a sneak peek at our top sponsors before the Exhibit Hall opens. This is your opportunity to network, have a snack and meet representatives from our Platinum Sponsors.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 13:00 2014 - 16:00 Consumer/New Family /Events-Meetings/Annual-Meeting/Sessions/Platinum-Preview-Lounge Yes No
Session123 POW! SPLAT! WHAM! Comic Books, Coping and Chronic Illness

Comic books can improve quality of life and mental wellness for both adults and youth living with a bleeding disorder. Members of the community will share their personal experience about the important role comics have played as they’ve coped with obstacles and discuss how comic book storylines might be used as a framework for daily life. We’ll also demonstrate how sharing your own story as a comic can have an empowering effect on the path to acceptance, responsibility and ownership. You will gain insight into how comics can both inspire and distract when times are tough, and leave with all the materials and instructions needed to create your own comic.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:15 2014 - 16:45 Consumer/New Family, Español Justin Levesque, BFA Val D. Bias, Jessica McGuinness, John Curtis Jennison Jr. /Events-Meetings/Annual-Meeting/Sessions/POW-SPLAT-WHAM-Comic-Books-Coping-and-Chronic-Illness Yes No
Session95 Preguntas Para los Expertos en español

Durante esta sesión, vamos a discutir los temas de hemofilia y la enfermedad de von Willebrand, incluyendo las definiciones médicas de estas condiciones, presentación clínica, opciones de tratamiento y prevención de la hemorragia. La sesión será en formato de pregunta abierta.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 10:30 Español, Consumer/New Family Irmel A. Ayala, MD Sponsored by Baxter International Inc. /Events-Meetings/Annual-Meeting/Sessions/Preguntas-Para-los-Expertos-en-Espanol Yes No
Session96 Prehab and Rehab for People with Bleeding Disorders Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 11:15 Physical Therapists Kim Baumann, MPT Jon Rose, PT, SCS, MS, ATC /Events-Meetings/Annual-Meeting/Sessions/Prehab-and-Rehab-for-People-with-Bleeding-Disorders Yes No
Session70 Preparing to Launch: The Challenges of Leaving Home

Some people have difficulty developing their independence and leaving home. Join us for a lively discussion about the dynamics of "preparing to launch" with a bleeding disorder. We'll explore the psychosocial issues between parents and kids when there's a chronic illness involved. We will also investigate practical and psychosocial resources and programs available to assist with the launch. And finally, we will examine pertinent cultural issues that affect patient independence.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 16:15 Social Workers Cat Stulik, LICSW Dana Francis, MSW /Events-Meetings/Annual-Meeting/Sessions/Preparing-to-Launch-The-Challenges-of-Leaving-Home Yes No
Session101 Rap Session: Adult Men

Come share your experiences with other adult men with bleeding disorders in this closed, confidential session.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 10:45 2014 - 11:45 Consumer/New Family Christopher Britton Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-Adult-Men Yes No
Session102 Rap Session: en español

Ven a compartir su experiencias en esta sesión cerrada y confidencial con otros miembros de la comunidad de habla hispana con trastorno hemorrágico.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 10:45 2014 - 11:45 Español, Consumer/New Family Guillermo Campillo Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-en-espanol Yes No
Session24 Rap Session: Industry Reps Who Are Consumers

Come share your experiences with other members of the community who are pharmaceutical or homecare representatives in this closed, confidential session.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:30 2014 - 16:30 Consumer/New Family Dwayne Whitis Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-Industry-Reps-Who-Are-Consumers Yes No
Session104 Rap Session: Inhibitors

Come share your experiences with other people affected by hemophilia with inhibitors, including family members, in this closed, confidential session.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:15 2014 - 12:15 Consumer/New Family Kari Atkinson Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-Inhibitors Yes No
Session13 Rap Session: LGBTQ

Come share your experiences with other members of the LGBTQ community in this closed, confidential session.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:00 2014 - 15:00 Consumer/New Family Justin Levesque, BFA, Philip Smith Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-LGBTQ Yes No
Session44 Rap Session: New Families

Come share your experiences with other new family members in this closed, confidential session.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family Randi Clites Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-New-Families Yes No
Session75 Rap Session: Women with Bleeding Disorders

Come share your experiences with other women with bleeding disorders in this closed, confidential session.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 16:00 Consumer/New Family, Victory for Women Shelly Mattson, Sarah Watson, MA, LLPC Rap Sessions /Events-Meetings/Annual-Meeting/Sessions/Rap-Session-Women-with-Bleeding-Disorders Yes No
Session38 Reducing Isolation Among Bleeding Disorders Social Workers

If you’re surprised at how other social workers function so well in their role and yearn for an easier way to stay connected with other bleeding disorders social workers, come to this session. We will open the discussion among bleeding disorders social workers to talk about what the social work role looks like across the country, and the level of support and connection that currently exists. We will hear an example of a well-established peer supervision model and see the new and improved Social Work section of the National Hemophilia Foundation’s website. This session will be interactive, and participants will have the opportunity to offer their thoughts on the benefits and challenges of staying connected.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:15 2014 - 11:15 Social Workers Amanda Pullen, MSW, LCSW Lauren Dunn, MSW, Ellen Kachalsky, MSW, LMSW, ACSW /Events-Meetings/Annual-Meeting/Sessions/Reducing-Isolation-Among-Bleeding-Disorders-Social-Workers Yes No
Session54 Remembrance and Celebration of Life

This gathering provides an opportunity every year for our community to reflect upon, remember and celebrate our loved ones, both living and departed. Take some time to consider our collective history and look forward to a better future. Everyone is welcome.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:00 2014 - 14:00 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Greg McClure, MA, MS, LSW /Events-Meetings/Annual-Meeting/Sessions/Remembrance-and-Celebration-of-Life Yes No
Session83 Research Posters Reception

All participants are welcome at this event, which showcases current research on bleeding disorders. Participants will have the opportunity to interact with abstract authors and ask questions about their research. All approved Research Poster Abstracts are on the USB drive included in your onsite registration bag.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 17:30 2014 - 18:30 Consumer/New Family, Español, Teens, Victory for Women, Chapter Staff, Physicians/Researchers, Nurses, Physical Therapists, Social Workers, Pharmacists Sponsored by Pfizer Hemophilia /Events-Meetings/Annual-Meeting/Sessions/Research-Posters-Reception Yes No
Session71 Roundtables: College, Career and Beyond

ROUNDTABLE #1: Applying Yourself: The Job Search – This interactive roundtable will focus on resume building, interviewing techniques and how to make a good impression with a potential employer. We will identify the most important points for a resume to include and if it’s vital to disclose your bleeding disorder and when. You will walk away with the tools needed to feel confident in the interview process and to frame yourself as a potential employee. ROUNDTABLE #2: Disability Accommodations in College and Beyond – This dynamic roundtable will help you determine what to consider when selecting a college. You will discuss campus disability accommodations, how to get to classes and navigate campus, and how to transition your healthcare from high school and parents to college and independence. You will take home a good knowledge of the resources that are available for students with bleeding disorders to help you transition from high school to college. ROUNDTABLE #3: What’s Next? Alternative Plans After High School – If college is not for you, what is your plan? This engaging roundtable will explore career and alternative education paths beyond high school. Find out what options are available to you, discuss important things to consider when choosing your path, including a career that works with your bleeding disorder. ROUNDTABLE #4: Creating Your Campus Experience – This roundtable is for you if you want to know what college life is going to be like. We’ll discuss how to have fun while staying safe in a new setting away from home. We’ll get into the debate about disclosing your bleeding disorder to peers on campus and what to be aware of. You’ll learn how to get involved in campus activities, connect with others who have bleeding disorders on campus, navigate your social life while managing your bleeding disorder, and how to advocate for your own needs in your new environment.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 17:00 Consumer/New Family Sami Jankins Ben Shuldiner, MSEd, Sachin Rudraraju, Tim Miller, MEd, Nikole Scappe, Don Molter, MSEd, Michael Drab, Sara Jestrab, Shaina Jenson Roundtables /Events-Meetings/Annual-Meeting/Sessions/Roundtables-College-Career-and-Beyond Yes No
Session55 Roundtables: en español

Únase a nosotros para una session interactiva que se iniciará con un grupo de individuos de la comunidad de trastornos hemorrágicos con diferentes or?genes y creencias. Vamos a discutir cómo las tradiciones de la cultura, la religion y la familia afectan las decisiones para obtener tratamiento de su trastorno hemorrágico y participación en eventos relacionados a su trastorno hemorrágico. Entonces tendremos dispersas mesas redondas donde podran conpartir su historia con otros. Usted aprenderá qué tradiciones culturales, religiosas y familiares han dado forma a su atención médica los hábitos y qué ideas y acciones pueden ser implementadas para mejorar su salud.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:00 2014 - 15:00 Consumer/New Family, Español Eileen Rivera Ley, Guillermo Campillo, Blanca Ramirez, Sonia Roger , Michelle Rice Roundtables Sponsored by Bayer HealthCare /Events-Meetings/Annual-Meeting/Sessions/Roundtables-en-espanol Yes No
Session56 Roundtables: Family Expectations

ROUNDTABLE #1: Changing the Dream: Parent’s Expectations After Diagnosis – When your child is born with a chronic medical condition like a bleeding disorder, what you expected to be a joyous event may be tinged with disappointment, frustration, fear and uncertainty. Join us for this special roundtable and learn from other parents how to cope and rise above your emotions to help your child succeed. ROUNDTABLE #2: Guilt: The Blame Game – Guilt is a powerful emotion that can direct how we act and react to those we love. It can be especially strong when a family member is diagnosed with a bleeding disorder. Join us for a dynamic roundtable discussion, where you can share your stories on how guilt affected you or a loved one. We will explore ideas and methods that can help you deal with guilt. ROUNDTABLE #3: Dad’s Empowerment: Where Is My Place? During this session we will focus on the important role of fathers in the care, nurturing and provision of treatment of children with bleeding disorders. We will discuss the ways in which fathers can inadvertently find themselves on the outside looking in, as mothers take on the dominant caregiving role. By the end of the session you will learn the ways in which your role as a father can be valued, appreciated and incorporated into the daily life in the family, and how to communicate with and be an active participant in the family in the care of your child. ROUNDTABLE #4: The Power of Failure: Making Us Stronger – At one time or another, all of us have blown our fuses, mishandled something, made mistakes. That’s okay. During this session we will discover what we can learn from those experiences, what triggers those overwhelming feelings of failure and then how we can do better next time. We can learn to forgive ourselves for our mistakes.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:00 2014 - 15:00 Consumer/New Family Joanne Fadale Wagner, MSW, LICSW, CCM, Laurel J. Pennick, MSSW, LCSW, Nancy G. Hatcher, MSW, LCSW, Diane S. Standish, LSW Roundtables /Events-Meetings/Annual-Meeting/Sessions/Roundtables-Family-Expectations Yes No
Session108 Roundtables: Free to Be Me: Respect My Diversity

Join us for an interactive session that will start with a panel of individuals from the bleeding disorders community with different backgrounds and beliefs. We will discuss how culture, religion and family traditions affect decisions in obtaining treatment of your bleeding disorder and participation in bleeding disorder-related events. Then we will break into roundtables where you can share your story with others. You will learn and be able to identify the cultural, religious and family traditions that have shaped your healthcare habits, and what ideas and actions can be implemented to improve your healthcare.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:15 Consumer/New Family Cathy M. Tiggs, MSSA, LISW Beverly Babin-Woods, Dwayne Graham, Connie Montgomery, Nicole Quinn-Gato, JD Roundtables /Events-Meetings/Annual-Meeting/Sessions/Roundtables-Free-to-Be-Me-Respect-My-Diversity Yes No
Session115 Roundtables: Getting Ready for the Next Phase

Are you moving from middle school to high school? Or are you about to graduate high school and move on with the next stage of your life? These group discussions are a chance for you to share some of your concerns about these transitions and hear examples from older kids who have navigated these changes themselves, how they coped and what they learned.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 12:00 2014 - 13:15 Teens Michael Drab, Evan Poole, Lauren O'Doherty, Kevin Young Roundtables /Events-Meetings/Annual-Meeting/Sessions/Roundtables-Getting-Ready-for-the-Next-Phase Yes No
Session72 Roundtables: Tips, Tricks and Techniques for Families

ROUNDTABLE #1: It Must Be True! I Saw It on the Internet – When receiving a medical diagnosis of a chronic disease such as a bleeding disorder, we to want to learn everything and anything we can. Today, we tend to turn to the Internet and social media to search for answers on outcomes, treatment, prognosis, symptoms and more. But how can you differentiate between opinion and fact? Hear from this interactive roundtable about people’s experiences, both good and bad, and learn from the group about methods for discerning valid medical information. ROUNDTABLE #2: Changing the Game: Expectations with Sports – This dynamic roundtable is for families of children of all ages with bleeding disorders who have chosen to participate in sports and want to be active in gym class at school. We will discuss the physical pros and cons of sports and the psychological pros and cons of belonging to a team, including choosing not to participate. You will be able to share and hear other families’ stories about what has been successful and what has not. ROUNDTABLE #3: Traveling: Everything but the Kitchen Sink – Don’t be intimidated, you can travel with a bleeding disorder or with a child with a bleeding disorder. Join this interactive roundtable to learn the tips and tricks for domestic or international travel with factor and supplies. Learn how to find the nearest treatment facility to your destination. Hear other’s stories and share your own experiences of what has worked for you and your family. ROUNDTABLE #4: Relaxation Techniques During Infusion – If you are stressed out by the thought of infusionand dread infusion day, then this roundtable is for you. This session will focus on relaxation techniques aimed at improving the infusion experience either for yourself or your child.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 15:00 2014 - 17:00 Consumer/New Family Laurel J. Pennick, MSSW, LCSW, Marc Gilgannon, PT, Chris Guelcher, APRN, MS, PNP-BC, Jennifer Maahs, MSN, PNP Roundtables /Events-Meetings/Annual-Meeting/Sessions/Roundtables-Tips-Tricks-and-Techniques-for-Families Yes No
Session25 Siblings: How to Step out of Their Shadow

Sometimes siblings of a child with a bleeding disorder remain in the shadow of their affected brother or sister, whose needs put them in the spotlight of the family.This session offers parents tips on how to involve siblings in everyday tasks of their brother or sister with a bleeding disorder, helping them step out of the shadow. We will discuss personal experiences of two families, including a mom with both affected and unaffected siblings. By the end of the session, you will learn creative tips from a psychologist on how to keep all your children involved and educated.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:30 2014 - 16:45 Consumer/New Family Diane Standish, LSW Spencer I. Duggan, Nina Duggan, Kirstin Drye, Lucas Rice /Events-Meetings/Annual-Meeting/Sessions/Siblings-How-to-Step-Out-of-Their-Shadow Yes No
Session61 Social Workers Luncheon: Spirituality & Religiosity in Adolescent Hemophilia Patients

This presentation will provide an overview of a social work research study conducted with adolescent hemophilia patients at Rush Hemophilia & Thrombophilia Center, with a focus on pain, chronic disease self-efficacy, and spirituality/religiosity. As parents may influence the beliefs of their offspring, a measurement of spirtuality/religiosity of the parent primarily involved in the adolescent’s care was also collected. A description of the three survey instruments used for data collection will be described. The study rationale, design, preliminary results and implications for further research will be shared. Through this presentation, it is hoped participants will learn about implications for this research with adolescents with hemophilia in their own practices. In addition, it is hoped that participants will consider initiating research studies on topics of interest at their centers.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 13:30 2014 - 14:45 Social Workers Eric Iglewski, LMSW Debra Honig, MSW, LCSW, Lucy Ramirez, MSW, LCSW /Events-Meetings/Annual-Meeting/Sessions/Social-Workers-Luncheon-Spirituality-Religiosity-in-Adolescent-Hemophilia-Patients Yes No
Session124 Speak Up: Learning to Advocate for Yourself

Whether you are affected by a bleeding disorder or not, learning how to speak for yourself is an important skill you will need as you grow up and gain more responsibility. This session will give you a chance to practice dealing with tricky situations where self-advocacy skills are needed.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:15 2014 - 16:15 Teens Christa Dardaganian, MA Callie Clark, Alexandra Johnson, Lucas Rice /Events-Meetings/Annual-Meeting/Sessions/Speak-Up-Learning-to-Advocate-for-Yourself Yes No
Session89 Steps for Living Jeopardy Game

What is a fun, fast-paced way to test your bleeding disorders knowledge? You’ll be quizzed on topics relating to bleeding disorders, treatments and history in the style of the game show Jeopardy. Alex Trebek is not included.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:00 2014 - 09:30 Teens Victoria Baker, Patrick Cordova, Carson Ouellete, Marlee Whetten /Events-Meetings/Annual-Meeting/Sessions/Steps-for-Living-Jeopardy-Game Yes No
Session109 Support for School Issues

Enrolling a child with a bleeding disorder in school can come with its own set of unique challenges. This session will teach you how to access support for school issues. We will discuss one family's personal experience. We will also share information on how to use 504 plans, and other resources and tools for parents and HTCs. By the end of the session you will learn how to make the most of available resources to ensure your child receives the educational experience he or she needs.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:00 Consumer/New Family Lauren Dunn, MSW Don Molter, MSEd, Murai Johnson, Ayana Woods, MPH /Events-Meetings/Annual-Meeting/Sessions/Support-for-School-Issues Yes No
Session97 Taming the #SocialMedia Beast

Social media is constantly changing and can be overwhelming to understand and keep up with. This session will discuss and offer ways teens with a bleeding disorder can engage online, safely network, and exchange information with others.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 10:30 Teens Rich Pezillo, Christa Dardaganian, MA /Events-Meetings/Annual-Meeting/Sessions/Taming-the-SocialMedia-Beast Yes No
Session16 Telling Your Story: Annual Fund Appeal and Direct Mail

People give from the heart. Whether we are asking for support in person or through fundraising campaigns and direct mail, we need to tell stories to inspire giving. Join us as we talk about how to tap into the emotions of potential donors through stories of those we have helped and those we want to help in the future. Any time we make an ask, we need to share our vision of a better world. That vision is most powerful when there are real lives being changed.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 14:15 2014 - 15:15 Chapter Staff Suzanne Mooney /Events-Meetings/Annual-Meeting/Sessions/Telling-Your-Story-Annual-Fund-Appeal-and-Direct-Mail Yes No
Session79 The Awesomeness of Camp

Kids know camp is awesome, but sometimes parents have a hard time letting their child take that first step toward independence. This session will outline the benefits of camp programs, offer strategies for overcoming fears of sending children to camp and give you a small taste of what camp is like for your child. You will also learn how to frame the camp experience for your child so he or she will be prepared for the experience.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:30 2014 - 17:30 Consumer/New Family, Español Ayana Woods, MPH Chris Shifflett, Patrick Torrey, Michelle Leona Cecil /Events-Meetings/Annual-Meeting/Sessions/The-Awesomeness-of-Camp Yes No
Session12 The Ethics of Self-Care

In this session social workers will learn the essential role of self-care and self-awareness as the underlying foundations of ethical practice. Participants will be presented with examples of how a lack of self-care increases the potential for blurred boundaries, resentment toward patients, impaired professional judgment and burn out. A case will be made that these professional pitfalls and others have the capacity to undermine ethical decision-making and best practices. Social workers also will learn why an emphasis on social justice must include the self. Professionals can be role models for self-care while instilling and supporting this value in others.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 13:30 2014 - 16:30 Social Workers Sabrina Farina, LMSW, Cathy Hulbert, LCSW Ruth Lipschutz, LCSW, ACSW /Events-Meetings/Annual-Meeting/Sessions/The-Ethics-of-Self-Care Yes No
Session98 The O Word: How to Think about Obesity in a Patient-Centered Way

According to the CDC, childhood obesity has more than doubled in children and tripled in adolescents in the past 30 years. Youth who are overweight or obese are more likely to struggle with risk factors related to cardiovascular disease, diabetes, joint problems, sleep apnea, and social and psychological problems such as stigmatization and poor self-esteem. In this session you will learn about the dynamics related to childhood obesity and how to have a positive impact.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 09:30 2014 - 11:15 Social Workers Joanne Fadale Wagner, MSW, LICSW, CCM Tania Heller, MD, FAAP, CEDS /Events-Meetings/Annual-Meeting/Sessions/The-O-Word-How-to-Think-about-Obesity-in-a-Patient-Centered-Way Yes No
Session120 Transition Tools, Policies and Plans for the Next Generation

Transition from a pediatric to an adult model of care for the adolescent and young adult patient within the same hemophilia treatment center (HTC), or from a pediatric HTC to an adult HTC, can be one of the most challenging times in the treatment relationship. This workshop will review the new Got Transition: National Center for Health Care Transition Improvement’s tools and highlight the key role social workers play in supporting patients and providers during this process. The participants will have an opportunity in small groups to develop a transition policy (the first of in the 6 elements required for a successful transition approach for a practice) and discuss their draft policy with other social workers during the session.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 15:00 2014 - 17:00 Social Workers Melinda Galizia, MSW, LCSW, C-SWHC, C-ACYFSW, C-ASWCM, Jill J. Swenson, LICSW Patience H. White, MD, MA, FAAP, FACP /Events-Meetings/Annual-Meeting/Sessions/Transition-Tools-Policies-and-Plans-for-the-Next-Generation Yes No
Session103 Unwrapping the Present: Mindfulness 101

In today's 24/7, gadget-driven society, we are so distracted with social media and tech devices connecting us at all times that we are never "off." Join us for this unique, interactive session where you will learn yoga techniques to allow you to be present, focus on the now and relax.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:00 2014 - 12:00 Consumer/New Family Sami Jankins Amanda Hardaway, ERYT-500hr /Events-Meetings/Annual-Meeting/Sessions/Unwrapping-the-Present-Mindfulness-101 Yes No
Session110 Voices of Aging

During this session, the social worker will learn about the experience of the older adult with hemophilia from the personal perspective of a consumer as well as from the professional perspective of the HTC care team. The audience will gain an historical understanding of the bleeding disorders community, how events have shaped the experiences of the older adult living with hemophilia and other co-morbidities, and the medical and emotional challenges faced by the older adult with hemophilia. Finally, the audience will learn the strategies that the social worker can use in the delivery of care to effectively work with the older adult as needs continue to change and evolve.

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 11:30 2014 - 13:15 Social Workers Colleen Joiner, LMSW Randall Curtis, MBA, Patrick F. Fogarty, MD, Sally S. Wright, MSW, LCSW /Events-Meetings/Annual-Meeting/Sessions/Voices-of-Aging Yes No
Session45 VWD and the Family

During this session we will provide an overview of von Willebrand disease (VWD), and how diagnosis and treatment affect the whole family. We will share information on coping with the diagnosis, managing the disorder and specific challenges during childhood and adulthood. We will also discuss available medications and therapies for treatment and prevention of bleeding episodes. By the end of the session you will learn what to expect during the progression of VWD from infancy to adulthood; the benefits of the family working together to support each other’s health and how best to use your medical team at the hemophilia treatment center (HTC)

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 09:30 2014 - 10:30 Consumer/New Family Christopher Walsh, MD, PhD /Events-Meetings/Annual-Meeting/Sessions/VWD-and-the-Family Yes No
Session30 VWD Family Celebration

Join a family-friendly party for folks with VWD! There will be music, munchies, libations and plenty of fun activities for the kids, including face painting. There will also be a member of NHF's public policy team present to answer any insurance/reimbursement questions you may have. This is a great opportunity to connect with familiar faces, make new friends and get to know the VWD community at the Annual Meeting.

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 19:00 2014 - 20:30 Consumer/New Family Sponsored by CSL Behring /Events-Meetings/Annual-Meeting/Sessions/VWD-Family-Celebration Yes No
Session26 We Are Family! African American Voices

Join us for an interactive discussion with and for African American families affected by bleeding disorders. You will walk away with the knowledge that you are not alone on this bleeding disorders journey. We will discuss the importance of open communication for better healthcare outcomes. We ARE family! Let’s be a community--come and join us!

Thursday, September 18, 2014 Thursday, September 18, 2014 2014 - 15:30 2014 - 16:45 Consumer/New Family Cathy M. Tiggs, MSSA, LISW Beverly Babin-Woods, Megan Adediran, Dwayne Graham, Connie Montgomery, Murai Johnson, Ayana Woods, MPH, Val D. Bias /Events-Meetings/Annual-Meeting/Sessions/We-Are-Family-African-American-Voices Yes No
Session65 What the Cultural Diversity Working Group Can Do For You

Join us for this session to learn about the history of NHF’s Cultural Diversity Working Group, what its role is and what it can do for you.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 14:45 2014 - 15:45 Chapter Staff Sonia Roger, Ayana Woods, MPH, Connie Montgomery /Events-Meetings/Annual-Meeting/Sessions/What-the-Cultural-Diversity-Working-Group-Can-Do-For-You Yes No
Session80 World Federation of Hemophilia Update

Created in 1996, the Humanitarian Aid Program of the World Federation of Hemophilia (WFH) channels donations of life-saving treatment products to people with bleeding disorders who need them all around the world. This program is one of the many ways in which the WFH supports its vision of Treatment for All.
The WFH started a Humanitarian Aid Program 18 years ago with much hope and a donation of 2.8 million IUs. You will hear from WFH President Alain Weill, Board VP of Medical Marijke van den Berg and Deputy Director of Programs Assad Haffar on how the WFH Humanitarian Aid Program has evolved and what that means for national member organizations.
A key component of humanitarian aid is global distribution of treatment products. Leigh Carpenter, Chief Pharmacist at Hemophilia of Georgia, which works in collaboration with WFH USA to secure and distribute donations, will shed some light on this critical step.
Finally, our guest speaker Megan Adediran, head of the WFH’s national member organization in Nigeria, will discuss the role NHF played in helping her country achieve its goals for hemophilia awareness and access to care.

Friday, September 19, 2014 Friday, September 19, 2014 2014 - 16:45 2014 - 17:45 Consumer/New Family, Chapter Staff Dr. H. Van den Berg om, PhD, Leigh Carpenter, RPh, Assad Haffar, Alain Weil, Megan Adediran /Events-Meetings/Annual-Meeting/Sessions/World-Federation-of-Hemophilia-Update Yes No
Session125 Wrapping It Up Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 16:15 2014 - 17:00 Teens /Events-Meetings/Annual-Meeting/Sessions/Wrapping-It-Up Yes No
Session126 Wrapping It Up: Closing and Goodbyes

Chapter leaders will learn about what NHF Chapter Services staff has planned for you in 2015, including a first look at NHF's new chapter intranet. Do you need more support for your chapter? This is the time to ask! Attend this session and enter to win a free round-trip flight to NHF’s 67th Annual Meeting in Dallas, Texas in 2015!

Saturday, September 20, 2014 Saturday, September 20, 2014 2014 - 16:15 2014 - 16:30 Chapter Staff Michael Craciunoiu /Events-Meetings/Annual-Meeting/Sessions/Wrapping-It-Up-Closing-and-Goodbyes Yes No
CSV