Our History

In 1953 a group led by Dorothy Watts White and Dorothea Golemb organized the Rochester Chapter of the National Hemophilia Foundation for the purpose of providing advocacy, support and assistance to people affected by hemophilia.  It was one of the first chartered hemophilia chapters in the nation.  In 1959 the chapter, with the help of Mary Gooley established our Hemophilia Center as a specialty outpatient clinic offering comprehensive care for the diagnosis and treatment of people with hemophilia and related clotting disorders. It was one of two such centers in the country and the first to be organized as a free-standing clinic.

In addition to providing medical care and support services, the Center has also, throughout its history:

• participated in clinical research
• advocated for individuals and for the hemophilia community
• educated the healthcare community and the public about bleeding and blood-related disorders.

Mary M. Gooley served as our Center's first executive director until she retired in 1986. During the 60's, 70's and 80's, our Center remained at the forefront of hemophilia care. Our staff helped establish programs in Buffalo, Syracuse, the Southern Tier, and Albany. Together, the patients and staff successfully lobbied for federal funding for comprehensive hemophilia care.

Our Center continued to grow and change with the times, often leading the way with the newest products and treatments for patients. There were many medical and scientific advances to enjoy. Then came disaster!

Because blood-clotting products were contaminated by our nation's tainted blood supply, AIDS and Hepatitis threatened to wipe out an entire generation of patients with hemophilia. With the onset of the AIDS virus came indescribable human tragedy and suffering. It also brought with it a huge medical challenge - how would we treat people with hemophilia?

The Center also faced a tremendous organizational challenge of how it would remain viable to provide comprehensive hemophilia care if it lost a large number of patients. Where would we get funding? And what kind of care would be provided to the patients if the Center went out of business? How could we as a Center ensure continuation of care for those with hemophilia whether or not they had contracted AIDS? These were merely a smattering of the questions and challenges we faced.

After careful study and consideration, the board of directors recommended expanding the Center's mission by widening its potential base of support. This would allow us to stay funded and to continue meeting the needs of patients.

Later, the Center began applying its experience in comprehensive hemophilia care to other inherited chronic disorders - von Willebrand Disease and hemochromatosis. In offering comprehensive medical and psychosocial services to people affected by these disorders, the Center maintained its role as a national leader.

Today, we provide world-class treatment, advocacy and research to individuals and families affected by various inherited disorders, including disorders related to homeostasis (blood clotting), iron overload and a rare enzyme deficiency called Gaucher's Disease. We strive to increase patient independence through self-care management, and to improve quality of life for our patients and their families. Children growing up with hemophilia today face a much brighter outlook than did their peers of 20 years ago.

Staffed by a select team of highly trained doctors, nurses and social workers, we provide patients with the education, skills and medical care necessary to manage their conditions, lessen their fears and live normal, active, productive lives.