News
HANDI Highlights Back-to-School Resources
Health and Well Being, Living with a Bleeding Disorder
New Resource to Help Students with Bleeding Disorders. Lean more about resources 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,…
Pfizer Announces New Data from Hemophilia A Gene Therapy Study
GLHF News
Pfizer has announced positive topline results from their phase 3 clinical study of giroctocogene fitelparvovec, the company’s investigational hemophilia A gene therapy. …
Attention Clinicians! New Bleeding Disorders Education Available from IHS
Industry News & Research
These new medical-based webinars will speak to key topics relevant to the care of patients with inherited bleeding disorders. NBDF is excited…
New Resource Compilation on Gene Therapy for Hemophilia
Gene Therapy, Industry News & Research
Learn about Gene Therapy for Hemophilia with NBDF’s new resource collection. Find answers, research, and support. The National Bleeding Disorders Foundation (NBDF) is…
NBDF Announces a New Enduring and Accredited Educational Activity Available to Healthcare Providers
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new enduring and accredited educational activity available to healthcare providers. “Exploring…
Camp Klotty Pine – Celebrating Independence, Friendship and Fun – Celebrating Another Successful Year!
GLHF News
Camp is an unforgettable experience for anyone fortunate enough to participate. Just one week each summer can give you memories that will…
Pfizer Announces New Data from Hemophilia A Gene Therapy Study
Gene Therapy, Industry News & Research
Pfizer has announced positive topline results from their phase 3 clinical study of giroctocogene fitelparvovec, the company’s investigational hemophilia A gene therapy. …
BioMarin to Narrow Its Commercial Focus for Hemophilia A Gene Therapy
Gene Therapy, Industry News & Research
BioMarin recently announced that they will be changing the scope of their efforts to manufacture and market their gene therapy product ROCTAVIAN.™…
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…
NBDF Unveils THRIVE Campaign: Empowering Individuals with Bleeding Disorders through 6 Essential Steps
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) announces the THRIVE campaign to raise awareness and educate on living healthily with bleeding disorders. The…
Pfizer Presents Marstacimab Trial Updates at EHA Annual Meeting
Industry News & Research
Pfizer recently provided new clinical trial updates for their investigational therapy marstacimab. The data was presented last month at the 2024 annual meeting…
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…
What May Be on the Horizon for Hemophilia Treatment?
Industry News & Research
Gene therapy research continues to evolve. As more information becomes available, the below may help you better understand gene therapy and shared…
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…