The National Hemophilia Foundation was founded in 1948 by Robert and Betty Jane Henry, parents of a young boy with hemophilia. When their son, Lee, was born, the only treatment for hemophilia was blood transfusions. The life expectation for a person with hemophilia was around 24 years old. However, the Henrys were determined to do everything they could to make life better for their only son – including frequent blood transfusions from father to son.
The Henrys knew that there must be other families in the country like theirs, isolated by fear and frustrated by lack of research and treatment. With no organization to support them, Robert Henry decided to create what he and these other families needed. In 1948, he founded what was then called the Hemophilia Foundation. In the ensuing years, he would build the organization into one that brought doctors and researchers together, and supported families who were struggling to keep their children healthy. In 1954, he established the foundation’s Medical Advisory Council (now Medical and Scientific Advisory Council) to issue treatment and research recommendations for people with hemophilia. All across the country, chapters of the Hemophilia Foundation began to spring up, created by parents of children with hemophilia, who worked to organize blood drives, raise money and awareness, and encourage doctors and researchers to search for a cure.
Today, the National Hemophilia Foundation serves people across the US with all bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and platelet disorders. We support a network of 50 chapters across the country. We have given more than 22 million dollars to bleeding disorders research. We provide education and support to countless families with bleeding disorders, seek to find undiagnosed women with bleeding disorders, and work tirelessly to protect access to healthcare on the state and local level.
Robert and Betty Jane Henry founded NHF because they knew they could enact meaningful change by bringing families affected by bleeding disorders together. They wanted to ensure that people with bleeding disorders were heard by scientists and healthcare providers; legislators and government agencies. More than 70 years later, we honor the legacy of the Henrys by ensuring the bleeding disorders community remains at the heart of everything we do.