Joyce Graff
Joyce Graff founded in 1993 the VHL Family Alliance, a national non-profit organisation focused on von Hippel-Lindau (VHL). Over the next 20 years she oversaw its growth into an internation- al network of patient support groups for VHL and other hereditary kidney cancer syndromes. A cancer survivor herself (breast cancer, 1979), she has been the primary researcher and advocate for her husband and son with VHL since 1963.
She has written extensively on VHL, HLRCC, and pheochromocytoma. She served 10 years on the board of the National Organisation for Rare Disorders (NORD) and four years on the Director’s Consumer Liaison Group (DCLG) of the US National Cancer Institute. She has been a reporter for the Kidney Cancer Association International Symposia in Chicago (2011, 2012, and 2015). A frequent speaker at national and international cancer meetings, Joyce continues her patient advocacy work through the Powerful Patient and its weekly internet radio show. She is currently the Executive Director of the New England Regional Genetics Group.