CREATIVE SOCIAL WORK PROGRAMMING
SW
11:30AM–1:30PM
Moderators: Susan Kocik, MSW; Dawn von Mayrhauser, MSW, LCSW
Speakers: Sue DuTreil, LCSW, DCSW, ACSW; Danna Merritt, MSW; Lauren Dunn, MSW; Bonnie Weissberg, LCSW
This session will present new programs and strategies designed and implemented by social workers from HTCs throughout the country.

EVERYTHING YOU THOUGHT YOU KNEW ABOUT BLEEDING DISORDERS BUT DIDN’T (Traducido en Espanol)
C  Do the 5!
11:30AM–1:30PM
Moderator: Debbi Adamkin
Speakers: Shari Bender; Vicki Jacobs-Pratt; Roshni Kulkarni, MD; Richard Pezzillo; Carl Weixler
After a brief, creative animated presentation depicting the basics of bleeding and clotting by Dr. Kulkarni, the panel will answer questions from parents. Areas to be covered include: dealing with the diagnosis of a bleeding disorder in your child, treatment options, sports, prophylaxis and rare bleeding disorders. Richard Pezzillo of the NHF Youth Leadership Task Force will give adolescent/young adult perspectives on managing hemophilia.

Sponsored by American Red Cross

NHF blood safety update (Traducido en Espanol)
Do the 5! A
11:30AM–12:30PM
Moderator: Shannon Penberthy
This session will provide an update about NHF's blood safety activities, including the latest information about variant Creutzfeldt Jakob Disease (vCJD) and the recent notification of persons with bleeding disorders in the United Kingdom.

THESE OLD BONES: HOW DO YOU KEEP GOING WHEN YOUR JOINTS ARE GONE?
PT C Do the 5!
11:30AM–1:30PM
Speakers: Angela Forsyth, MS, PT; Sharon Funk, RPT; Ruth Mulvany, MS, PT
This session will focus on the hemophilia patient who has severe joint damage. It will discuss how to keep going when joints are gone and will include input and suggestions from the audience regarding inventions that have helped them. Participants will learn about options to help them keep going, such as mobility assistive devices, orthotics, braces, and pain management techniques and arthritis management, such as surgeries, injections and joint protection. Examples of what other people have found that has worked for them will be an important dimension of the session.

NATIONAL PREVENTION PROGRAM (NPP)
REPORT-OUT
A FIVE YEAR CELEBRATION OF NPP’S DO THE 5!
A Do the 5!
12:00PM–1:00PM
Moderators: Rebecca Brodsky, MPH;
Ann Marie Nazzaro, PhD
This unique panel of chapter staff and consumers will honor the five-year anniversary of the Do the 5! campaign with discussion about creative chapter programs you can start in your community. Program successes and suggestions for modifications will be shared in an interactive session. Highlights include invigorating community participation and easy-to-do program evaluation techniques that will allow you to monitor the success of your project. Featured projects include:

EXHIBIT HALL LUNCHEON
A
1:30PM–2:30PM
Join us in the Exhibit Hall for a complimentary lunch and a chance to enjoy and visit our spectacular exhibits.

POSTER SESSION/MEET THE AUTHORS
P
1:30PM–2:30PM
Meet the authors of important, cutting-edge research. Make your own assessment of which top abstracts should be published in Haemophilia, the international journal of the World Federation of Hemophilia.

RAP SESSIONS
C  
1:30PM–3:00PM
Unique opportunities to talk informally with others whose situation and interests are the same as yours.

Select from:

NURSING LUNCHEON
RN
1:30PM–3:00PM
Moderators: Jennifer Maahs, MSN, PNP;
Susan Zappa, RN, CPN, CPON
Speakers: Claudia Lupia, RN, BS, OCN; Karen Whiff, RN
A panel of experienced nurses give their perspective on the changes in care of persons with bleeding disorders over the past twenty years.

Sponsored by Novo Nordisk

CSO LUNCHEON AND BUSINESS MEETING
CS
1:30PM–3:00PM
Speaker: Ann Rogers
Special Guest: Claudia Black
Join us for a networking luncheon for staff, volunteers and board members of the NHF chapters. Elections will be held for officers of the Chapter Staff Organization. Due to limited space, this luncheon is restricted to CSO members only.

Sponsored by Wyeth

NHF RESEARCH FELLOWS LUNCH
P
1:30PM–3:00PM
This special session provides an opportunity for all healthcare providers and researchers to meet with and discuss the work of NHF-funded research fellows over lunch.

Sponsored by American Red Cross

THROMBOSIS
MD
3:00PM–4:00PM
Moderator: Prasad Mathew, MD
Speakers: Janna Journeycake, MD; Craig Kessler, MD
This session will focus on issues related to childhood and adult thrombotic disorders, such as risk factors associated with thrombosis, the role of thrombophilia in childhood and diagnosis and management of thrombosis in children and adults. The session will review the evaluation of childhood and adult thrombosis.

Survivors and Their Stories: a celebration of elder heroes in the bleeding disorders community
SW C All
3:00PM–4:00PM
Introduction: Dr. Bradley Lewis, Alta Bates Medical Center Adult Hemophilia Program
The video, "An Unexpected Life: Living with Hemophilia," features the life stories of older men with hemophilia. These men have experienced an extended time of no treatment in their early lives, the development of progressively improved treatments, the setback of HIV and HCV and they have built the stamina to survive it all. This documentary was created by the Alta Bates hemophilia treatment center in Oakland, CA, with grant-funding. The session will provide background and screen the documentary.

ORTHOPEDICS: BEYOND THE JOINT BLEED
PT
3:00PM–6:00PM
Speaker: Michael Lucido, PT, OCS, COMT
This symposium focuses on differential diagnosis of common musculoskeletal problems of the knee, elbow and ankle. Through this session, you will:

TEACHING NEW FAMILIES
RN Do the 5!
4:00PM–5:00PM
Moderator: Christine Guelcher, MS, RNCS, PNP
Speaker: Regina Butler, RN
In this session nurses will hear about the latest methods for teaching new families about hemophilia, the tools available to assist with new family education and the optimal timing for teaching.

ASK THE EXPERT: PREGNANCY OPTIONS (Traducido en Espanol)
C  
4:00PM–5:00PM
Speaker: Andra James, MD, MPH
This is an opportunity to address questions about pregnancy to noted Duke University Ob/Gyn Andra James (American College of Obstetricians and Gynocologists member).

HEMOPHILIA OVER THE YEARS
MD  Do the 5!
4:00PM–5:00PM
Speakers: Carol Kasper, MD; Jeanne Lusher, MD
This session will describe the development of hemophilia care over the past forty years, with attention to medical and organizational advances and the rise of HTCs. By the end of the session, you will understand the inter-relation of medical discoveries and their application in medical care through adequate infrastructure.

TRANSITIONING (Traducido en Espanol)
C Do the 5!
4:00PM–5:30PM
Speakers: Judith Heineman; Katherine Lipsky; Ben Shuldiner
This discussion on how to effectively move through life stages and successive caregivers in bleeding disorder management will feature Ben Shuldiner. Ben, a successful young adult with factor IX deficiency, won everyone’s heart at the last Annual Meeting’s Opening Session. He and Judith Heineman, his mother, will present during this session.

PHARMACOECONOMICS OF HEMOPHILIA
C  Do the 5!
5:00PM–6:00PM
Moderator: Joan Wasserman, RN, MBA
Speaker: Brenda Riske, RN, MS, BSN, MBA
The literature describes pharmacoeconomic analysis as one method of assisting health-care decisionmakers in assigning priorities for the allocation of resources, both within a particular disease area and between different diseases. Conducted well, with full and appropriate information, this type of analysis can contribute to improving clinical outcomes through the endorsement of evidence-based medicine. The treatment of hemophilia with replacement therapy is an area that could be significantly affected by such an approach.

Sponsored by Novo Nordisk

PROJECT RED FLAG RECEPTION
AND WOMAN-TO-WOMAN
C  
5:00PM–6:30PM
Speakers: Anna DeSimone; Celine Caithemer;
Mary Anne Schall, RN, MS; Elaine Alred; Darcy Zwier
Join us for an update on Project Red Flag outreach activities, grant funding and a special demonstration of the exciting, effective peer education workshop: Woman-to-Woman.

EHLERS DANLOS
PT  Do the 5!
5:30PM–6:30PM
Speakers: Margaret Heisel Kurth, MD; Susan Konzal, PT
This session will focus on the clinical diagnosis and management of persons with Ehlers Danlos, emphasizing:

DEPRESSION AND HEMOPHILIA
SW
5:30PM–6:30PM
Moderator: Christi Humphrey, MSW
Speaker: Jim Swinney
One of the key threats to successful management of a bleeding disorder, coping with life issues and self-empowerment is depression. Identification of depression, coping strategies and treatment will be discussed in this session.

HEMOPHILIA AND THROMBOsis RESEARCH SOCIETY MEETING (FORMERLY HRS)
MD
6:30PM–8:30PM
Moderator: Eric Werner, MD
Speakers: Amy Dunn, MD; Janna M. Journeycake, MD;Wing-Yen Wong, MD
Speakers will discuss the management of:

• joint bleeds in hemophilia patients with active, high-titer
  inhibitors (Wing-Yen Wong, MD)
• CVL thrombosis in hemophilia patients (Janna Journeycake, MD)
• adenotonsillar surgery in type 1 vWD patients (Amy Dunn, MD)
  Light food fare will be served.

SATURDAY, NOVEMBER 6, 2004 (top)

INDUSTRY SYMPOSIUM II:
Von Willebrand disease (VWD): Overview, treatment and Experience
A
7:00AM–9:00AM
Speakers: Thomas Abshire, MD and a panel of 3 women/mothers with VWD
The objective of this symposium is to educate patients, their families, and professionals about von Willebrand Disease (VWD) and its appropriate treatment. Topics presented will include an overview of VWD, appropriate and timely treatment of bleeds, prophylaxis, and surgery. Additionally, there will be a panel discussion with women who have VWD and who also have children with the same disorder. The panel will discuss some of the topics presented and share their experience. This program will provide CE contact hours for nurses. Supported by an unrestricted educational grant from ZLB Behring and sponsored by the Postgraduate Institute for Medicine (PIM). Breakfast will be served.

INDUSTRY SYMPOSIUM IIi:
Pathways to Choice: There Are Options for Hemophilia B
A
7:00AM–9:00AM
Speaker: Jorge Di Paola, MD
The objective of this symposium is to educate patients, parents, and their families about the important factors that should be considered when reviewing product choices available for the treatment of hemophilia B. It will provide an overview of bleeding disorders and a summary of parameters that should be considered when selecting a treatment. Breakfast will be served.

Sponsored by ZLB Behring in conjunction with the Coalition for Hemophilia B

MASAC
MD
9:00AM–5:00PM
This is the regular meeting of NHF’s Medical and Scientific Advisory Council (MASAC). This session is open to all.

ETHICS/INDUSTRY ISSUES (Traducido en Espanol)
A
9:30AM–11:30AM
Moderator: Heather Curry, RN
Speakers: Jane Dinnen, RN; Derek Robertson, MBA, JD; Michael Rosenthal; Tami Wood-Lively; JD, MHA
Boundary issues: what hat are you wearing today? Pharma guidelines: what’s their impact on industry? This session will focus on the complexity of relationships between consumers and industry and how ethical guidelines, when adopted, serve both parties. The role of industry on boards of directors, and patients (consumers) who work for industry will be discussed. By the end of the session, you will learn to look for and understand conflicts and potential conflicts of interest.

PARENTING SKILLS (Traducido en Espanol)
C  
9:30AM–10:30AM
Moderator: Debbi Adamkin
Speakers: Laurie Kelley
The focus of this session will be on parents of children with a chronic condition and communication skills for parents.

DEVELOPMENT AND TREATMENT OF PERSONALITY DISORDERS AND SUBSTANCE ABUSE
SW
9:30AM–11:30AM
Moderator: Marilyn Gradowski, CISW
Speaker: Alice Parkinson, MS, APRN
This session will focus on factors contributing to the development of various personality disorders and subsequent drug and alcohol dependence. Models of normal personality development and deviations in development that increase vulnerability to disorders of the self, as well as ways in which these disorders may lead to abuse of substances, will be discussed. Participants will learn ways to conceptualize and treat personality disorders from both a biological and a psychodynamic perspective, and how addiction may be viewed as the outcome of self-medication.

NEW DIRECTIONS FOR RECOMBINANT CLOTTING FACTORS AND MANAGEMENT OF INHIBITORS
MD
9:30AM–11:30AM
Speaker: Donna DiMichele, MD; Steven Pipe, MD
This session will focus on new research aimed at improved replacement therapy for hemophilia and new strategies for inhibitor management. Speakers will discuss novel bioengineered forms of factors VIII, IX and VIIa, their status in preclinical investigations and novel strategies for inhibitor prevention and management. By the end of the session, you will learn what is on the horizon for treating the next generation of patients with hemophilia, including the risks and benefits of these new strategies.

Speaker Donna DiMichele, MD, sponsored by Bayer

CDC/UDC REVIEW AND CHECK-OFF
PT
9:30AM–5:30PM
Speakers: Physical Therapy Working Group Members
A discussion on the musculoskeletal portion of the UDC study will take place. Physical therapists will learn to demonstrate competence in correct goniometric measurement and form completion per the UDC study protocol. Note: Please schedule an appointment at registration if you have not been checked off previously.

Siblings (Traducido en Espanol)
C  
10:30AM–11:30AM
Moderator: Debbi Adamkin
Speaker: Tammy Molter
This session will focus on getting siblings involved with the decision making of your chronically ill child and teaching them to cope and adress their own sibling issues and concerns.

RADIOLOGIC ASSESSMENT
PT RN
11:30AM–1:00PM
Speaker: Mauricio Silva, MD
This session will focus on common radiologic procedures that are performed on persons with bleeding disorders. It will include discussion of indications for these procedures, introductory radiologic assessment and review of joint staging protocols for persons with bleeding disorders. Learning objectives: to understand introductory assessment of radiologic studies, to be able to name two types of joint staging protocols used in persons with bleeding disorders and two indications for plain films, CT and MRI.

State Advocacy Update (Traducido en Espanol)
A  
11:30AM–12:30PM
Moderator: Shannon Penberthy
This session provides the latest update about advocay activities in Washington, DC and across the nation. Key issues are:

• Insurance covereage
• Reimbursement
• Blood safety

PORTS/PROPHYLAXIS/OPTIONS (Traducido en Espanol)
C  Do the 5!
11:30AM–1:00PM
Moderator: Debbie de la Riva
Speaker: Paul K. Minifee, MD
Panelists: Brendan Hayes; Wes Hayes

This session will focus on venous access issues in prophylaxis, including port complications and strategies for transitioning to peripheral veins. Participants will learn to identify the obstacles to prophylaxis, complications of ports and new strategies.

Sponsored by Wyeth

NURSING CASE STUDIES: MILD HEMOPHILIA
RN
11:30AM–1:30PM
Moderators: Margaret Bosch, RN; Madeline Cantini, BSN, RN, CCRN; Sue Geraghty, RN, MBA; RuthAnn Kirschman, RNC; Jan Kuhn, RN, MPH; Melinda Nolte, MSN; Ellen White, RN, BSN
Nurses are invited to join the presenters for a discussion of interesting cases involving patients with mild hemophilia. There will be a Q & A time at the end of each case. By the end of the session, you will learn new ways to better manage difficult cases of mild hemophilia.

Sample Case: A 16-year-old male was diagnosed with mild hemophilia B following a serious motor vehicle accident. There is a positive history of hemophilia on the maternal side of the family. This case will present a poor outcome in someone with a mild form of the disease. In addition, this case will illustrate the importance of education regarding the inheritance of hemophilia and of testing.

LIFE WITHOUT TRAINING WHEELS: PLANNING
THE MOVES TOWARD INDEPENDENCE
SW Do the 5!
12:00PM–1:00PM
Moderator: Jean Holtz, LCSW
Speaker: Dennis Penning, BA
The presenters will focus on preparation for adult independence, management of a bleeding disorder at home and away and life beyond high school: education, career and life choices. Early preparation for the next steps, planning for when Mom isn’t in the next room, examining the array of choices for education and training after high school and the decisions involved will be discussed. What parents, chapters and HTCs can do to assist this maturing independence will also be addressed. Participants will learn how to foster a healthy involvement in treatment planning: transitioning, educational options and resources; how someone with a bleeding disorder should plan a trip; and how to explore resources on the internet, through your chapter/association and HTC connections.

Sponsored by Wyeth

AWARDS LUNCHEON
A  
1:30PM–3:00PM
Enjoy lunch while NHF recognizes remarkable and distinguished individuals and programs in the bleeding disorders community. Volunteer and professional awards will be presented, including Physician of the Year, Humanitarian of the Year, Outstanding Chapter Leadership, Social Worker of the Year, Nurse of the Year and Physical Therapist of the Year. Awards of Distinction in Programs - honoring the highest caliber of prevention education and health communication projects - will be presented to chapters and associations.

Sponsored by Novo Nordisk

RESEARCH ON ADHERENCE
PT  Do the 5!
3:30PM–4:30PM
Moderator: Kelly Williams, MSW, LCSW
Speaker: Sue du Treil, LCSW, DCSW, ACSW
This session focuses on the results of a six-year research project in Louisiana that studied the issue of adherence to high intensity treatment regimens. The literature, research methods, data analysis, results and impact this project may have on the future care of the hemophilia patient and the profession of social work will be discussed. Learning objective: to understand the benefits that patients and medical professionals (physicians, nurses and social workers) can gain from the evidence-based practice of social work with particular emphasis on the role of research in that practice.

GENETICS 201: MEDICAL UPDATE AND A PRIMER FOR BASIC HEMOPHILIA GENETICS
RN MD
3:30PM–5:30PM
Moderator: Renee Killian, RN, MPH
Speakers: Maribel Johnson, RN, MA; David Lillicrap, MD; Katherine A. High, MD
The molecular aspects of genetics, as well as education, testing and counseling of patients and “at-risk” family members will be the focus of the session. Speakers will discuss genetic testing methods and their current success rates with hemophilia A and B, benefits versus difficulties/drawbacks of genetic testing and ethical considerations. In addition, recent challenges and new developments in the field of Gene Therapy will be discussed. By the end of the session, participants will learn how to explain current testing methods to patients, the importance of identifying and following symptomatic carriers and ideas for developing a systematic, proactive approach to carrier detection.

Sponsored by Avigen

GLOBAL HEMOPHILIA CONCERNS: WORLD FEDERATION OF HEMOPHILIA (Traducido en Espanol)
A  Do the 5!
3:30PM–5:30PM
Moderator: Mark Skinner
Speakers: Claudia Black, Susan Zappa, Haydee Benoit De Garcia
As a national member organization of the World Federation of Hemophilia, NHF is pleased to host this WFH session. It will highlight the international issues in bleeding disorders care, factor supply and safety, the WFH twinning program, and the interrelation of developed and developing country bleeding disorders concerns.

INSURANCE: NAVIGATING THE INSURANCE MAZE (Traducido en Espanol)
A  Do the 5!
3:30PM–5:30PM
Room: Reunion Ballroom F
Speakers: Sally McCarty, Gregory McClure, MA, MS, LSW
This important session features Sally McCarty, who was the Commissioner of Insurance for the state of Indiana for seven years and is now working with the Indiana Hemophilia and Thrombosis Center and Greg McClure, Social Worker with the Illinois chapter of NHF, HFI.

Topics will include:

• benefits, rights and getting insurance
• state variations in health insurance
• child insurance services
• COBRA...how and what it's good for
• Medicare/Medicaid issues

ASK THE EXPERT: ORTHOPEDICS
PT
4:30PM–5:30PM
Experts: Maureen Finnegan, MD; Alice Anderson, PT, MS, PCS
An interactive session about the physical therapist’s concerns regarding orthopedic management of persons with bleeding disorders. Bring questions about arthritis and other joint problems. Possible topics include, but are not limited to, synovectomy (arthroscopic vs. radionuclide), joint replacement and participation in sports, exercise and rehabilitation.

Sponsored by Novo Nordisk

ASK THE EXPERT: WOMEN’S ISSUES
C  Do the 5!
5:30PM–6:30PM
Experts: Andra James, MD, MPH;
Andrea Lukes, MD, MHSc
Women with von Willebrand disease and women who are carriers of bleeding disorders will have the opportunity to address questions to two noted Ob/Gyns. After a brief introduction by the physicians, the audience’s questions will guide and create the session.

FINAL NIGHT EVENT
A
7:00PM–11:00PM
A Roy Rogers and Dale Evans shindig - two-stepping at a Dude Ranch is this Annual Meeting’s fine finale.
Join in the Western extravaganza with authentic Texan barbeque, live music, line dancing and various fun-filled country Western activities, such as, crawfish/armadillo racing, trick roping, face painting, cowboy singing and much more for attendees of all ages.

Sponsored by Baxter

SUNDAY, NOVEMBER 7, 2004 (top)

COMMUNITY CAUCUS: YOUR REQUEST IN 2003 BECOMES AN IMPORTANT DIMENSION OF ANNUAL MEETING 2004
A
8:30AM–9:30AM
Moderator: Michael Rosenthal
This is an opportunity to continue the dialogue among NHF Board, staff, chapters, associations, providers and community.