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All Bleeding Disorders

NBDF News Mention: Sad News of a Mother Charged in Death of 3-Year-Old Chelsea Boy with Hemophilia

NBDF News Mention: Sad News of a Mother Charged in Death of 3-Year-Old Chelsea Boy with Hemophilia

Data provided by the National Bleeding Disorders Foundation (NBDF) was referenced recently in the coverage of a tragic case in Chelsea that took a dark turn for 3-year-old Yael Guardado Prudencio, a child with hemophilia and a seizure disorder.

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs

Court Rules in Favor of Patients regarding Copay Accumulator Adjustor Programs
In a major victory for patients who depend on prescription drugs, Judge John D. Bates of the U.S. District Court for the District of Columbia struck down a federal rule that allowed health insurers to not count drug manufacturer copay assistance towards a beneficiary’s out-of-pocket costs.

Government Relations Update - August & September 2023

Government Relations Update - August & September 2023
Explore the latest updates on federal healthcare advocacy, including the progress of the HELP Copays Act with bipartisan support, Congressional discussions on plasma safety, and NBDF's state-level efforts in Massachusetts, Michigan, Ohio, Oregon, Pennsylvania, and Wisconsin, culminating in the upcoming 2023 Insurance and Reimbursement Conference.

Victor Grifols Roura Medical Symposium on Bone Health and Pain Disorders

This year’s Victor Grifols Roura Medical Pre-conference Symposium focused on several key aspects of “Bone Health and Pain in Bleeding Disorders.” A few leading clinician-researchers in the field were brought together to review the pathophysiology of bone disease, share current research data on bone health and the impact of pain in bleeding disorders, as well as offer physical therapy strategies and interventions for managing joints and associated pain.

You Can Impact the Future of the Inherited Bleeding Disorders Community: The National Research Blueprint

NBDF has taken the lead on an initiative to develop a National Research Blueprint (NRB), a community-driven journey to shape the future of research together with researchers, the HTC interdisciplinary team, non-profit organizations, government, and industry partners, and, most importantly, people directly affected by bleeding disorders. Our goal is to establish ways to conduct research in the most inclusive, coordinated and efficient manner that includes patients in all stages of research. In this session, we will provide updates on the NRB initiative and how you can get involved.

The Future is Now: Digital Health

While many of us likely dabbled in telehealth during the pandemic, digital health is proving to be that and so much more. Come hear about some of the latest innovations in technology that currently or will soon be available for those living with inheritable blood disorders. Share your questions and ideas on what digital health tools could improve your life.

Money Matters - Career Options

With new treatments, remote work options, and an ever-changing economy, work and career decision-making can feel like a whole new calculation these days. This session will cover what to consider about job options when you have a bleeding disorder, whether or what disclosure about your bleeding disorder should be made, how to communicate about needed accommodations, and what rights you have as a job applicant and as an employee.

The Basics of Innovative Therapies: What You Need to Know

We continue to see significant research and innovation in the treatment of Hemophilia.  It is becoming more important than ever to stay informed on all the advancements and innovation  – what they are, how they work in the body and how safe they are.   Understanding all the options including currently approved treatments, the pros and cons and the promise and limitations of each type of therapy will enable community members to have informative conversations with their providers and to ultimately make the best decision on treatment.  This presentation is designed to

Gene Therapy Basics for Hemophilia: What You Need to Know

Recently there has been an explosion of innovative research in the treatment of Hemophilia utilizing gene therapy technology. This workshop will help you develop a basic understanding of the complexities of gene therapy including terminology, how gene therapy works, and identifying the potential, limitations, risks and unknowns associated with gene therapy. We also provide a brief introduction to other novel therapies and an overview of what treatments are currently approved.

How Do YOU Navigate?

Learning through the lived experiences of others is helpful in navigating the landscape of bleeding disorder care. In this workshop, participants will be given an opportunity to learn through investigating scenarios building on the previously delivered material but also through discussions of the issues they are facing in their own everyday life. By the end, participants will receive practical tips and will feel connected and empowered.

Choose to Take Control

Being a good consumer is more than just access to products and care, it is also about knowing the do’s and don’ts that impact your daily life with a bleeding disorder. It’s about understanding your disease, choosing a care team, clearly communicating your needs and accepting responsibility for making the decisions that ensure your safety and wellbeing. During this interactive presentation, we will discuss tips, tricks and tools available to help you become a better self-advocate and an overall good consumer.

Playing it Safe

Staying active is imperative for people with bleeding disorders, it helps you retain and regain joint health, prevent mobility issues and lead to a better quality of life. Join this presentation to find motivation, support, and easy-to-use resources that can help you find the sport or exercise that's the right fit for you.

Navigating Pain

Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life. This session will improve understanding of how pain affects people with bleeding disorders and approaches for managing pain. It will also provide resources for communicating with your provider to ensure that pain associated with bleeding and joint damage is addressed appropriately.

PTSD in Chronic Conditions

During this session, you will gain a deeper understanding of post-traumatic stress disorder (PTSD) and how it can manifest for a person with a bleeding disorder or a family member. We will discuss how PTSD can affect your personal and professional relationships and ways you can seek both medical and non-medical help.

Women Bleed Too

Women and girls with bleeding disorders often deal with particular issues and taboos related to diagnosis, symptoms, access to care. In this session, an expert who works to improve the quality of life for women and girls with bleeding disorders will discuss essential information on the challenges of getting a diagnosis and accessing care and treatment. In addition, an affected individual will share their experience as a woman with a bleeding disorder.

Navigating Virtual School At Home

During COVID-19, many children are now figuring out how to learn online through virtual schooling. Many parents and caregivers are now tasked with balancing work, online school, and child care. This session will discuss strategies, tips, and stories of how to navigate the online school and virtual learning with a child who has a bleeding disorder.

Movement and Mobility

Throughout the different stages of living with a bleeding disorder, we can be or become immobile at one point or another. During this session, you will learn movement and meditation techniques that alleviate stress and anxiety that come along with a bleeding disorder.

Meet NYLI

What does it mean to be a future leader of the Bleeding Disorders Community? Is it possible to make a difference at my chapter while I'm still a teen? If you're looking to get involved these questions are probably on your mind. Come meet members of NBDF's National Youth Leadership Institute (NYLI), who will share how they've been able to make a difference through Education, Advocacy, and Chapter Work training. Not only are they making a difference - they're leveling up in the real world as a result.

Parent Partnership & Mental Health

As a parent or primary caregiver of a child with a bleeding disorder, it's easy to put all of your focus into managing your child's care. Especially during this time, it is important to nurture your relationship with your partner - and to make your mental and emotional health a priority. This session will impart some personal experiences, as well as strategies and tips on how to balance your roles in your partnership and designate time to nurture your mental health and well-being.

OUCH! Tackling Pain Together

NHF’s Medical and Scientific Advisory Council (MASAC) recently approved new treatment guidelines for providers who administer opioids to treat pain in people with bleeding disorders. Come learn about the new guidelines from expert providers and consumers and what they might mean to you.

Blood and Product Safety

An update on safety and supply issues relating to blood and therapeutic products used by people with bleeding disorders. This will include discussion of product recalls the past two years, the January 2020 NBDF/HFA Safety Summit convened by the National Bleeding Disorders Foundation and Hemophilia Federation of America, emerging pathogens (e.g., COVID-19), and the latest safety surveillance information.

Just Do It... or Don't

Given relatively limited literature specifically on return to physical activity after injury for people with bleeding disorders, many physical therapists may lack competence in developing tailored recovery plans and providing prudent guidance to patients and their families. We will consider and apply recommended guidelines for return to activity and sport, critically appraise existing return to activity evaluation tools and applications, and compare and contrast return-to-work evaluation tools and applications for people with bleeding disorders.

Pain Management: Tool Box Not a Pill Box

The session will discuss pain related to bleeding disorders in the developmental stages and how infants, children and adolescents with bleeding episodes experience, express and cope with pain. It will review the latest research on management and assessment of pain in children and provide guidance on pain education for families and caregivers. Treatment and intervention strategies for physical therapists will be reviewed and followed by a group discussion.

Playing It Safe: Physical Activity with a Bleeding Disorder

Let's get moving! This free webinar, led by expert physical therapists, will help you find the right activity for you. You will learn how to work with your healthcare providers to find engaging exercises that will benefit you, regardless of your age, current fitness level -- and be safe for you as a person with a bleeding disorder. Register today to take a healthy step!

The Art of Speaking Up

People with bleeding disorders and caregivers often educate schools, workplaces, health care teams and communities to ensure the right care and support to thrive. The Hemophilia Experiences, Results and Opportunities (HERO) study found that while many people are satisfied with support from partners, friends and family, a major roadblock to support from others was lack of knowledge about bleeding disorders.

To Reveal or Conceal: Navigating Disclosure of a Bleeding Disorder

Deciding when and how to talk about a bleeding disorder can be challenging, but it is an important part of life for people with bleeding disorders and caregivers. This session explores ways to communicate about bleeding disorders in real-life situations. Topics covered may include social situations, dating and relationships, employment, disclosure to family, and social media.

Speakers:

Edward Kuebler, MSW, LLC
Cathy Tiggs, MSSA, LISW

Skills for Coping with Anxiety and Depression

Life with a chronic condition can be challenging at times, adding stress to the lives of people with bleeding disorders and their caregivers.  The Hemophilia Experiences, Results and Opportunities (HERO) study, conducted by Novo Nordisk, found that while many people experience anxiety when adapting to life with a bleeding disorder, this can be reduced when quality information, advice and support networks are available.  Mental health and physical health are closely related, and this presentation will discuss how stress can affect life, how to know when life is out of bal

Marijuana: Breaking it Down, the Good, the Bad, and the Consumption

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Alfredo A. Narvaez, Jr., MSW, LMSW
Social Worker, Louisiana Comprehensive Hemophilia Center
Tulane University Medical Center

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

Prevalence of Depression and/or Anxiety in Children Seen at the Arizona HTC’

*ASWB

Moderators:

Amy Schadewald, MSW, LICSW, ACM
Clinical Social Worker, M Health Fairview Center for Bleeding and Clotting Disorders

Connie Thibodeaux, MSW, LCSW, BAC
Hemophilia Social Work Coordinator
Louisiana Center for Bleeding & Clotting Disorders
Tulane University School of Medicine / Deming Department of Medicine

Speaker:

Ethics: Blurred Boundaries

*ASWB

Moderators:

Kathaleen Schnur, LSW
Social Worker, Hemophilia Center of Western Pennsylvania

Lucy Ramirez, MSW, LCSW
Clinical Social Worker, Rush Hemophilia & Thrombophilia Center

Speaker:

Alana Brunner, LCPC, NCC, CCMHC
Mental Health Therapist
St. Luke’s Psychiatric Wellness

By the end of this session, the participant should be better able to:

Cannabis Applications & Implications

*ANCC

Speaker:

Khalid Namoos
Medical Fellow, UCLA David Geffen School of Medicine

By the end of this session, the participant should be better able to:

  • Compare cannabis formulations and discuss the evidence for their potential use
  • Discuss the evidence for clinical indications for cannabis use
  • Describe the pharmacokinetics and physiological effects of cannabis 

Mild Phenotypes: The Struggle is Real

*ANCC  

Moderator:

Jennifer Donkin, RN, DNP, CPNP, CFNP
Nurse Practitioner
Children's Hospital of Los Angeles

Speakers:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Penni J. Smith, MPA, BSN, RN-BC
Hemophilia/Hematology RN Coordinator
Utah Center for Bleeding and Clotting Disorders
Primary Children’s Hospital  

Today's Technology

*ANCC

Moderator:

Tamara Bullock, RN-BC, BSN
Hemophilia Community Nurse, University of Iowa Hospitals and Clinics

Speakers:

Penny Kumpf, RN-BC, BSN
Von Willebrand Outreach Nurse
Hemophilia of Georgia

Michael DeGrandpre
Creative Director
Hemophilia Federation of America

By the end of this session, the participant should be better able to:

Challenging Cases

*ANCC

Moderators:

Sharon L. Littig, RN
Clinical Coordinator
Cardeza Foundation Hemophilia Center at Jefferson University

Jessica Pindilli, BSN, RN
University of Wisconsin Hospital & Clinics
UWHC Comprehensive Program for Bleeding Disorders

Speakers:

Maria Tovar-Herrera, RN-BC, BSN
RN Coordinator
Rush Hemophilia and Thrombophilia Center

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