About Us

Bob has Hemophilia A and since 1991 has been active in the bleeding disorders community. Bob currently volunteers as the Public Policy Director for the New York State Bleeding Disorders Coalition (since 2009) and on the Steering Committee of Medicaid Matters New York, a coalition of Medicaid stakeholders from across New York State. In 2021 Bob was recognized by the Every Life Foundation as the State Advocacy Patient Advocate of the year, and in 2025 he received a NORD Rare Impact Community Champion award for his advocacy. Bob previously served on the NYS Rare Disease Work Group, and is honored to have been selected as a member of the new New York State Rare Disease Advisory Council. Having seen great strides made for people with bleeding disorders in his lifetime, Bob is dedicated to helping bring that progress to others with rare diseases. He can often be seen wandering the halls of government in Albany with his trusty sidekick Bernie.