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VHL (Von Hippel-Lindau) Family Alliance

Contact Information

Joyce Wilcox-Graff
2001 Beacon Street, Suite 208
Boston, MA 02135-7787

800-767-4VHL (4845) (Voice - Toll-free)
617-277-5667 (Voice)
858-712-8712 (FAX)

Internet Resources

Abstract

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.

Publications

Serial Publications: VHL Family Forum (quarterly). General Publications: The VHL Handbook; Your Family Health Tree; audiocassettes; videocassettes.

Keywords

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Notes

Audit

Date Entered: 10/1/1997
Date Edited: 3/8/2007
Date Revised: 10/22/2006 3:24:52 PM
Health Referral Number: HR2488
Accession Number:
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