The Mary M. Gooley Hemophilia Center is an independent, federally designated Hemophilia Treatment Center (HTC) based in Rochester, New York (serving people in the surrounding 12 county region) that cares for people affected by hemophilia, von Willebrand disease, rare inheritable bleeding disorders, hemochromatosis and Gaucher’s Disease. The Center is a 501(c)(3) non-profit corporation and a New York State Article 28 Diagnostic & Treatment Center. Our origins date to the late 1940s, when Rochester-area families affected by bleeding disorders came together to improve their lives and the lives of their children. In 1953 the group was chartered as a Chapter of the National Hemophilia Foundation (now known as the National Bleeding Disorders Foundation). The Center remains an NBDF chapter today. Behind Mary Gooley’s energy and leadership, the Chapter opened a Treatment Center in 1959 – one of the first independent treatment centers for hemophilia in the country.
Through the efforts of our expert staff, the Center provides treatment, education, advocacy, research and supportive programs to patients and their families. Through the activities and the leadership of multiple staff and medical staff members, the Center contributes to the larger bleeding disorders community on an ongoing basis via involvement with numerous organizations, groups and initiatives. The Center is a chapter with both the National Bleeding Disorders Foundation and Hemophilia Federation of America, proudly providing a wide array of supportive patient programs and networking opportunities for members of the regional bleeding disorders community. In addition, the Center closely collaborates with a number of other national organizations, including the Centers for Disease Control and Prevention (CDC), American Thrombosis and Hemostasis Network (ATHN) and the Hemophilia Alliance, collaborating to improve health outcomes and quality of life for persons with bleeding disorders.
The Center follows and supports a comprehensive care(integrated care) model, shown to yield better medical outcomes for our patients. This multi-disciplinary care model ensures that people have ready access to HTC nurses and hematologists experienced in the care of people with bleeding disorders, a host of other clinicians coordinated for their benefit, affordable medicine via our integrated pharmacy and a relationship with a dedicated, full-time social worker who specializes in bleeding disorders.
Those other professionals with whom the Center coordinates to benefit our patients include a diverse team of medical professionals representing orthopedics, pediatrics, physical therapy, dentistry, nutritional counseling, genetic counseling and other experts, all trained and experienced in bleeding disorders care and who know our patients and provide them with informed, compassionate care and medical advice. While a highlight of this care model is a “comprehensive care clinic,” which patients with severe disorders attend at least annually, care is ongoing around the clock and around the calendar. The Center’s staff members and consultants provide individualized treatment and attention.
Beyond medical treatment, the Center is dedicated to providing patients and their families with support, education, advocacy, and access to participation in research studies. This enables us not just to treat disease, but to care for people. We know that integrated clinical care and pharmacy services complemented by robust personal and family support lead to better life outcomes for people we serve. We recognize that our patients don’t get their identity from their disorder. They live full lives. We strive every day to help them help themselves and to embody the vision of our founder Mary Gooley and many others who helped her make the Center what it is today. Mary devoted her life to caring for others. She worked hard to help people be the best they could be, to be independent and to be well. This motto graces the Center’s walls and lives in our hearts: Caring is in our blood.
For a more detailed history of the Center CLICK HERE.
The Center is incorporated in New York State as a not-for-profit organization. To view the Center’s annual Audited Financial Statement or a copy of the Center’s completed IRS Form 990, please visit Guidestar.com.
