National Hemophilia Foundation (NHF)
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy, and research. Founded in 1948, NHF reaches across the United States, supporting those with bleeding disorders through numerous resources and initiatives, and also by working closely with its 52 affiliated chapters.
Educational Programs and Initiatives
NHF offers a broad range of education and outreach opportunities to those affected by bleeding disorders, as well as to those with symptoms but no official diagnosis yet. Historically underdiagnosed due to their rarity, bleeding disorders—such as hemophilia and von Willebrand disease—affect over one million people in the United States. To ensure these individuals and their families 1) understand their symptoms; 2) seek out proper treatment; and 3) learn to effectively manage their disorders, NHF’s educational initiatives include awareness campaigns (such as an online diagnostic tool designed to guide those potentially affected to answers) and events and resources centered on how to live healthy lives post-diagnosis.
Research
Since 1972, NHF has been awarding grants and fellowships to support innovative research aimed at finding better treatments and cures for bleeding disorders. This research has led to vital insights into improved factor replacement therapies, more accurate hemophilia diagnostic methods, and a greater understanding of the genetic basis of hemophilia. NHF also offers educational resources to healthcare providers and recently launched MyBDC, a community-powered registry that will provide a 360-degree view of how bleeding disorders affect both individuals and their immediate family members.
Advocacy
NHF supports increased federal funding for research. In addition, our public policy agenda includes working for improved access to high-quality medical care; a safe blood supply; access to the full range of safe and effective treatments; adequate reimbursement at the public and private levels; and expanded federal funding for hemophilia treatment centers. Washington Days, NHF’s annual national advocacy conference, brings together people from across the country to share their stories on Capitol Hill and to influence the legislative process.
Chapter Services
NHF’s 52 affiliated chapters agree to meet chapter standards in these areas: research, advocacy, program service, fundraising, and organizational development/infrastructure. Chapters receive hands-on support from NHF Chapter Services staff to help them achieve the standards to better serve their local communities. This support also includes coordinating requests for assistance; acting as a liaison to build relationships between chapters and HTC’s; supporting chapter efforts to promote research; and helping to devise tools and resources to meet chapter needs.
