News
HANDI Highlights Back-to-School Resources
Health and Well Being, Living with a Bleeding Disorder
New Resources to Help Students with Bleeding Disorders. Learn more about how to help students, families, and school personnel become better prepared…
Celebrating September: Awareness Highlights
Health and Well Being, Living with a Bleeding Disorder, Pain Management
September is filled with important observances that bring awareness to various causes. Join NBDF in celebrating Hispanic Heritage Month, Suicide Prevention Month, Pain Awareness Month,…
France Gets Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
by: Patricia Inácio, PhD | July 9, 2024 Hemgenix, the first approved hemophilia B gene therapy, was administered to two patients in France, marking the first time…
Defining Gene Therapy for Patients
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Gene therapy is a welcome treatment for patients, which has been anticipated for decades. But how do parents and patients discuss this…
Planting the Seeds of Leadership
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s National Youth Leadership Institute (NYLI) provides 18-24 year olds in the bleeding disorders community with leadership opportunities to encourage personal growth,…
Travel Tips for Young Adults with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
A globe-trotting college traveler shares advice for traveling safely. Having a bleeding disorder shouldn’t keep you from seeing the world. Just ask…
PTSD Can Affect People with Bleeding Disorders
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the…
HANDI Highlights Resources on Pain Management
Health and Well Being, Living with a Bleeding Disorder, Pain Management
As we enter the “dog days” of summer with high temperatures and heat weighing folks down throughout much of the US, it’s…
WTAE-TV (PA) Feature: Copay Accumulators – Who Really Benefits?
Industry News & Research, Living with a Bleeding Disorder
In an NBDF interview, Bill Robie, Senior Director of Government Relations, highlighted the ongoing challenges of living with von Willebrand disease. In…
FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
by: Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research and Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and…
Where is Your HTC?
Advocacy & Legislation, Living with a Bleeding Disorder
Do you need an HTC? A new HTC? Do you need to find one when you travel across the US? Check out the…
GLHF’s Wisconsin Bleeding Disorders Conference Celebrates Another Successful Year – Hosting More Than 50 Families!
GLHF News, Living with a Bleeding Disorder
GLHF’s annual Wisconsin Bleeding Disorders Conference, for people and families living with a bleeding disorder, was held June 7-9 at the Kalahari…
Hemophilia Affects Everyone – What Are Some Truths About the Care Partner Journey?
Health and Well Being, Living with a Bleeding Disorder
Hemophilia truth time: hemophilia is a shared experience—affecting family, friends, and loved ones. In a global survey of more than 2700 participants,…
ERIN Initiative Champions Inclusivity in Inherited Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Discover how the European Rare & Inhibitor Network (ERIN) is breaking barriers and advancing inclusivity for those with inherited bleeding disorders. This…
For People with Bleeding Disorders, Adherence Is Still a Problem
Health and Well Being, Living with a Bleeding Disorder
Even as therapies for hemophilia have expanded and improved, the issue of not following treatment regimens as directed remains a major point…
Calling all Athletes! The Gettin’ in the Game Junior National Championship is in Henderson, NV Sept. 20-22.
GLHF News, Living with a Bleeding Disorder
CSL Behring will host the Gettin’ in the Game Junior National Championship (JNC) in Henderson, NV on September 20 – 22, 2024. Participants will…
Free Educational Videos on the use of Novel Non-Factor Therapies
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the availability of a series of educational videos on the use of…
Activity Explores Non-Factor Replacement Therapy in Hemophilia Care
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is excited to announce a new accredited educational opportunity for healthcare providers. This live/virtual program will…
Own Your Path
Living with a Bleeding Disorder
Take charge of your health care journey with the Own Your Path program! If you’re an adult on prophylaxis treatment for VWD…
Discover the New Steps for Living Website Coming Soon!
Health and Well Being, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is thrilled to announce the upcoming launch of the revamped Steps for Living website, your ultimate…
Bleeding Disorders Substance Use and Mental Health Access Coalition
Health and Well Being, Living with a Bleeding Disorder, Pain Management
The BD SUMHAC was created from tragedy. A young man with a bleeding disorder facing a substance use disorder was repeatedly denied…
What is “Health Equity”?
Advocacy & Legislation, Living with a Bleeding Disorder
Unfortunately, health inequities are a sad reality in the United States health care system. Together with the inheritable blood and bleeding disorders…
Gene Therapy Candidates Face ‘Once in a Lifetime’ Choice
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
People with hemophilia considering gene therapy are wrestling with concerns including the cost of treatment and variations in results. You only get…
Get to Know Bleeding Severity Levels for Hemophilia
Living with a Bleeding Disorder
Learn how mild, moderate, or severe hemophilia influences lifestyle choices and medical care. Your hemophilia doesn’t define who you are. But it…