VHL (Von Hippel-Lindau) Family Alliance - VHL
info@vhl.org
www.vhl.org 
Other Contact Information
2001 Beacon Street, Suite 208
Boston,
MA 02135-7787
800-767-4VHL (4845) (Voice - Toll-free)
617-277-5667 (Voice)
858-712-8712 (FAX)
Description
The VHL Family Alliance, founded in 1993, is an international network of support groups for people with von-Hippel-Lindau. VHLFA brings together families, friends, physicians, and researchers, to improve diagnosis, treatment, and quality of life for individuals and families affected by VHL. VHL is one of the most common of the familial cancers. A flaw in one tumor-suppressor gene, causes vascular tumors of the eye, brain, spinal cord, kidney, pancreas, or adrenal glands. A Handbook and various other materials are available in ten languages. The Alliance promotes the sharing of information. There is a telephone hotline in English, Spanish and French, a website, online discussion groups in five languages, and referrals to physicians for second opinions worldwide. VHLFA also maintains a Tissue Bank and funds research. Membership in the Alliance includes quarterly newsletters, information on meetings and a copy of the VHL Handbook. Funded through memberships and private donations.
Print Resources
Serial Publications: VHL Family Forum (quarterly). General Publications: The VHL Handbook; Your Family Health Tree; audiocassettes; videocassettes.
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