Who We Are

Multiple bleeding disorder patient organizations and provider organizations operate in NYS.  In 2008, these organizations came together to collaborate as an informal coalition to enable patients and family members statewide to participate in advocacy efforts.

The following groups are represented in the Coalition:

P = Patient Organizations   HTC = Hemophilia Treatment Centers

      P - Hemophilia Association of New York (New York City)

      P - New York City Hemophilia Chapter (New York City)

      HTC - Weill Medical College of Cornell University (New York City)

      HTC - Long Island Jewish Medical Center (Long Island)

      HTC - Mt. Sinai Medical Center (New York)

      P/HTC - Western New York Hemophilia Center (Buffalo)

      P/HTC - Mary M. Gooley Hemophilia Center (Rochester)

      P - Central New York Bleeding Disorders Association (Syracuse)

      HTC - SUNY Upstate Medical University (Syracuse)

      P - Camp High Hopes and Camp Little Oaks (Syracuse)

      P - Bleeding Disorders Association of the Southern Tier (Binghamton, Southern Tier)

      HTC - UHSH Blood Disorder Center (Johnson City / Binghamton)

      P - Bleeding Disorders Association of Northeastern New York (Albany, Northern NY)

      HTC - Regional Comprehensive Hemophilia & vW Treatment Center (Albany)

      P - Coalition for Hemophilia B (National)

      P - National Hemophilia Foundation (National)

Together and in collaboration, these organizations provide a broad array of medical and supportive services to the nearly 2,000 people (2007 data) across NYS who are living with bleeding disorders.  In addition, the Coalition communicates and coordinates with the hemophilia provider community (HTCs and HTC physicians) and the NYS Hemophilia Advisory Panel.