I’m Joyce Graff, CEO of VHL Family Alliance. My husband died of von Hippel-Lindau disease (VHL) in 1997 and my son currently strives to manage his health while living with the disease. After years of pursuing my own career goals, I retired and “put my energy where my heart is” and became focused on finding a cure for VHL.

The VHL Family Alliance was created in response for health management of people suffering from von Hippel-Landau disease (VHL), and dedicated to the discovery of a cure for VHL. Devoted to provide up-to-date information on how to manage your health, as well as access to support services which include; online discussion boards, e-mail and telephone inquiry. VHL Family Alliance is committed to finding medical attention for those living with von Hippel-Landau disease in general, as well as for members with particular tumors. A wealth of information collected by VHL Family Alliance is distributed through our newsletter four times per year and is readily accessible on line along with archived newsletters dating back to 1993. Inspirational family stories, highlighting people with VHL, and their families are also available.

Additionally, VHL Family Alliance provides expert guidance to locate current research and development in the areas of VHL and DNA testing, VHL and pancreas information, as well as pheochromocytoma and VHL and ELST.

VHL Family Alliance arms members with a VHL Handbook for support as they go through the process of dealing with various treatments for the disease such as, Stereotactic radiosurgery and Radio frequency ablation, as well as the procedures of VHL and tissue banks.

VHL Family Alliance is committed to provide accessibility of their gathered knowledge to those whom are blind, deaf, and physically handicapped. Assuring no one is without resources who are in need of health management and information while dealing with this disease.