For over 50 years the Mary M. Gooley Hemophilia Center has been a voice for people with bleeding disorders in both the public and private arenas. We believe that patient advocacy and support is just as important as medical treatment. In this spirit, The Center has been very active in representing the bleeding disorders community to federal and state officials along with private and corporate foundations and the media. Educating all empowered institutions about our challenges and needs gives the bleeding disorders community a much needed voice of advocacy.
The Center is also a member of the New York State Bleeding Disorders Coalition which unites many of the various bleeding disorders groups across the State into one unified and organized voice representing our issues, needs and concerns at the State level. We are proud to have the Center’s Vice President, Public Policy, Tom Wilmarth as the current Executive Coordinator of the Coalition.
Fortunately, the larger hemophilia community includes many energetic, gifted advocates and more come to life every day. Every year the Center participates in at least two important legislative initiatives. As a chapter of the National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation), the Center representatives attend NBDF’s annual “Washington Days” which brings together NBDF chapters from across the country to advocate for policies and legislation at the federal level that are important to the bleeding disorders community and educate legislators about bleeding disorders. At the State level, the Center (as a member of the New York State Bleeding Disorders Coalition) helps to organize an annual “Albany Day” with similar goals. The Center also partners with experienced advocates from Hemophilia Federation of America and other organizations on issues that impact people we serve.
Beyond government advocacy, we also individually advocate on behalf of patients. The Center’s advocacy team works with our Social Worker to help patients and families navigate complex, ever-changing healthcare landscapes. Whether it’s working with commercial insurance, Medicare or Medicaid, we can provide expert advice and support to help ensure that patients maintain appropriate coverage for their chronic health conditions. In addition, the Social Worker also acts as a liaison, speaking up for the rights of patients and families, ensuring good communication and better health outcomes.
Successful advocacy relies on the people who are affected or involved speaking up, telling others about themselves and their experiences. Successful advocates tell their stories to people in positions to influence decisions. People in the bleeding disorders community can feel confident that they can be part of the efforts to advocate for and improve the lives of those in the community – the community has a long history of effective advocacy. The Mary M. Gooley Hemophilia Center strongly encourages all patients and families to be part of this effort. We provide guidance to train you and support you every step of the way. Please contact the Center to ask how you can become involved.
President & CEO
Links & Resources:
Find your Federal Representative: http://www.house.gov/representatives/find/
Find your Federal Senators: http://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your State Assembly Member: http://assembly.state.ny.us/mem/search/
Find your State Senator: http://www.nysenate.gov/
National Hemophilia Foundation Advocacy: https://www.hemophilia.org/Advocacy-Healthcare-Coverage
New York State Bleeding Disorders Coalition: https://www.nysbd.org/
Hemophilia Federation of America Advocacy: http://www.hemophiliafed.org/advocacy/