The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, the National Hemophilia Foundation has chapters throughout the country. Its programs and initiatives are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).
Advancing Medical Knowledge and Scientific Research NHF awards grants to fund innovative research aimed at finding better treatments and cures for bleeding and clotting 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. Our Medical and Scientific Advisory Council (MASAC), an internationally-respected group of scientists, physicians and other treatment specialists, issues quality of care and treatment recommendations for bleeding and other related disorders.
Public Policy Initiatives The National Hemophilia Foundation 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 make their voices heard and impact the legislative process.
Educational Programs and Initiatives Our broad range of programs and services include:
National Prevention Program (NPP)—Aimed at preventing or reducing the complications of bleeding disorders, key components of this education program are:
- Do the 5 – five key strategies for living a longer and healthier life.
- First Step – information and support for families of infants and young children newly diagnosed with bleeding disorders. The Train-the-Trainer component brings together parents, Hemophilia Treatment Center staff and chapter representatives with practical strategies and support.
- National Youth Leadership Institute (NYLI) – training to help young adults enhance their leadership capabilities and become future leaders in the bleeding disorders community.
- “On the Road” – annual regional training conferences bring together individuals, families, healthcare professionals and staff from NHF chapters, associations and HTCs to network and to learn from one another.
- Project Red Flag – national public awareness campaign to educate women and healthcare providers about bleeding disorders in women.
For more information contact HANDI, NHF’s free, confidential information resource center that answers questions, makes referrals, provides literature and maintains an extensive library collection on bleeding and clotting disorders. Phone 800.42.HANDI.
