von Hippel-Lindau syndrome
- VHL Family Alliance
- 171 Clinton Road
- Brookline, Massachusetts 02445
- Phone: 617.277.5667, 800.767.4VHL
(answered in English, Spanish, and French)
- Fax: +1.858.712.8712
- E-mail: info@vhl.org
- info-es@vhl.org [Spanish]
and info-fr@vhl.org [French]
- Web site:
www.vhl.org/, www.vhl-europa.org (lists support groups throughout Europe)
- Languages: en español, en français, auf deutsch, dansk, Belgie, in het Nederlands, Japanese
- Handbook (2005) is being translated into 12 language, including Chinese.
Also See:
- von
Hippel-Lindau Syndrome Information, GeneClinics
- VHL:
A Genetic Disease, NIH
- VHL:
A Genetic Disease, family's story
- Von
Hippel Lindau Disease: Genetic, Clinical, and Imaging Features
Radiology (March) 146:629-642,1995
- von
Hippel-Lindau Disease, National Institute of Neurological
Disorders and Stroke (NINDS), National Institutes of Health (NIH)
-
The
Official Patient's Sourcebook on von Hippel-Lindau Disease,
ICON Health Publications, Official Health Sourcebooks
Revised
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Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu
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