Welcome to the April edition of the Resource Roundup (formerly HANDI Highlights), a periodic communication of the Neil Frick Resource Center (NFRC), designed to connect the bleeding disorders community with practical and…
Tania Hanscom is the director of development for NBDF, where she focuses on building relationships with donors. She oversees lead donor portfolio growth and stewardship, drives fundraising strategy, and develops and executes donor pipeline…
It has been well understood by many in the bleeding disorders community that clinical trials are, historically, very limited and not fully representative of the actual disease populations. In an effort, to drill down on the barriers to…
Federal:Day of Awareness on Capitol Hill for Women and Girls with Bleeding Disorders On April 17, NBDF was joined by the Hemophilia Federation of America, Hemophilia Alliance, Coalition for Hemophilia B, FAIR Time for Women…
Dr. Esther Cooke received her Ph.D. from the Leeds Institute of Cardiovascular and Metabolic Medicine at the University of Leeds, U.K., where she studied the role of fibrinogen phosphorylation in thrombosis. Dr. Cooke is currently a postdoctoral…
The National Bleeding Disorders Foundation (NBDF) has joined with three international bleeding disorders organizations in their call to action to continue research and development into gene therapy as a treatment option for hemophilia.The joint…
Novel gene editing therapies being developed for hemophilia could represent a significant advance in treatment, should they reach commercialization and become available to patients. They encompass very complex concepts and technologies that prompt…
The New England Journal of Medicine (NEJM) recently published long-term follow up data on patients who have previously received the hemophilia B gene therapy fidanacogene elaparvovec. The therapy was approved by the U.S. Food and Drug…