The New York City Hemophilia Chapter (NYCHC) was started with the premise that if people have a chance to get together, share experiences, and learn from one another, their health and quality of life vastly improves and the feeling of isolation and fear is diminished. Since inception, NYCHC has aimed to grow organically, to respond to the needs of the community, and to work closely with Hemophilia Treatment Centers (HTCs).
NYCHC was incorporated in and obtained its 501 (c)(3) status in 2008. We are a Chapter of the National Bleeding Disorders Foundation (NBDF) and a member organization of Hemophilia Federation of America (HFA).
With a core staff and dedicated volunteers, NYCHC serves the greater NYC community with programs and events for people with hemophilia, Von Willebrand Disease, and rare bleeding disorders; as well as families, teens and young adults, the Latino community, women, bleeders with inhibitors, and more.
In 2006, prior to Chapter status, our founder, Melissa Penn, along with two other hemophilia families, started the New York Hemophilia Walk. With a small grant from a pharmaceutical company, giveaways from her home-care company, tie-dye t-shirts, and a community from her son’s nursery school, the Walk attracted 200 participants and raised $12,000. The following year, the number of Walk participants and money-raised more than doubled. The growing success of the NYC Walk inspired and motivated the National Bleeding Disorders Foundation to create the National Unite Walk program. Today, more than 40 chapters around the country host their own Walks to raise funds and awareness, and this all began with Melissa’s efforts in our backyards more than twenty years ago.
NYCHC is always looking for motivated and dedicated volunteers and input to enhance our programming. Please direct all inquiries to [email protected].
