BioMarin Pharmaceutical Inc. has announced that it has decided to pull the hemophilia A gene therapy ROCTAVIAN (valoctocogene roxaparvovec-rvox) from the United States market. This is following an announcement in October of 2025 that it was looking…
Pathway to Cures (P2C), the venture philanthropy fund of the National Bleeding Disorders Foundation (NBDF), is pleased to announce the appointment of Michael Recht, MD, PhD, MBA, as chief medical and scientific advisor.Building on his tenure as NBDF…
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new matching grant partnership with Save One Life that will double the community’s impact for children living with bleeding disorders, including hemophilia A, hemophilia B,…
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The objective of this study is to collect a large data base of gait parameters on individuals from the age of 12 months to 99 years old who do not have neuromotor deficits. This ongoing study will be the basis of comparison for people with…
The Hemophilia Alliance, The Alliance Pharmacy, and the Hemophilia Alliance Foundation are pleased to support the 2026-2027 Joe Pugliese Educational Award. This award is a scholarship provided annually to individuals diagnosed with an inherited…
On Saturday, March 28th, join us live for a national NBDF livestream featuring real stories, expert voices, chapter highlights, and live music, all in one shared space. This event brings together lived experience, advocacy, and…
This program offers scholarship opportunities to students living with a neuromuscular condition, primary immunodeficiency disease, or a bleeding disorder. The InfuCare Rx Scholarship Program helps people with chronic and complex medical conditions…
Federal: NBDF Wraps Up Another Successful Washington DaysLast week, 357 advocates met with 244 different offices on Capitol Hill as part of NBDF’s annual Washington Days to talk about issues important to…