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Von Hippel Lindau

Self Help Clearinghouse

This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.

VHL Alliance (Von Hippel-Lindau Syndrome)

(MULTILINGUAL) International network. 35 US chapters; 18 foreign affiliates. Founded 1993. Opportunity for families affected by Von Hippel Hippel Linday to share their knowledge and experiences with each other and the medical community. With patients at the focus of organization, the VHL Alliance is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by VHL. Newsletter, phone and online 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 or 617-277-5667
Fax: 858-712-8712
Website: http://www.vhl.org
Verified: 7/23/2013

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