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VHL Family Alliance (Von Hippel-Lindau Syndrome)
(MULTILINGUAL) International network. 28 US chapters; 11 foreign affiliates. Founded 1993. Opportunity for families affected by VHL to share their knowledge and experiences with each other and the medical community. Goal is to improve diagnosis, treatment and quality of life for VHL families. Newsletter, phone support, education, tissue bank and handbook. Literature available in Spanish, German, French, Japanese, Dutch and other languages. Funds research. Assistance in starting local chapters.
Write:
VHL Family Alliance
2001 Beacon St., Suite 208
Boston, MA 02135-7787
Voice: 1-800-767-4845
Fax: 858-712-8712
Website: http://www.vhl.org
E-mail: info@vhl.org
Verified: 9/25/2008
The above information was "verified" as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
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