VHL Alliance

The VHL Alliance is a voluntary, non-profit organization dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease (VHL). VHL is an inherited multisystem disorder characterized by the abnormal growth of blood vessels (angiomatosis) in certain areas of the body, such as the retinas, the brain, the spinal cord, and/or the adrenal glands. Established in 1993, the alliance is committed to distributing current information about VHL to affected individuals, family members, and physicians; promoting research studies and providing research grants; maintaining a VHL tissue bank; and enabling affected individuals to exchange information, resources, and mutual support through its networking programs. The alliance also helps establish standards for clinics that specialize in the diagnosis and treatment of VHL and provides referrals to designated clinical care centers in the United States and around the world. In addition, it offers telephone support, engages in patient and family advocacy, and assists in the development of local chapters. The organization provides a variety of educational materials in several languages.