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.
NHF’s 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 disorders and other related conditions.
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 (HTCs).
“Washington Days” – NHF’s annual national advocacy
conference brings together people from across the country to make their voices heard and influence the legislative process on Capitol Hill.
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
Steps for Living –a program to deliver information,
resources and support for families and patients with bleeding disorders. It includes three distinct programs-- First Step, for families with infants and children ages 0-8; Next Step, for families and young people ages 9-15; and Stepping Out, for families and young adults ages 16-25.
National Youth Leadership Institute (NYLI) – training to help young adults enhance their leadership capabilities and become future leaders in the bleeding disorders community.
"Spring Summit"– annual regional training
conferences bring together individuals, families, healthcare professionals and staff from NHF chapters and HTCs to network and to learn from one another.
Victory for Women – Initiative for women that incorporates education, advocacy, and support for women diagnosed with a blood disorder as well as raising awareness among women who have not yet been diagnosed.
NHF-affiliated chapters agree to meet Chapter Standards in
the areas of research, advocacy, program services, development and organization/infrastructure. Chapters
receive support from NHF’s Chapter Services Department to help them meet all the standards, in order to better serve
their local communities. This also includes coordinating requests for assistance; acting as a liaison to build
relationships between chapters and HTCs; and helping to devise tools and resources to meet chapter needs.
HANDI – NHF’s free, confidential information resource center answers questions, makes referrals, provides literature and maintains an extensive library collection on bleeding and clotting disorders. Phone 800.424.2634, e-mail: firstname.lastname@example.org