Resources- Specific Diagnosis Card Catalog- Von Hippel-Lindau Syndrome

Who to Contact

VHL Family Alliance
171 Clinton Road
Brookline, Massachusetts, USA 02146
(617) 277-5667
(800) 767-4845
Fax: (617) 734-8233
E-mail: info@vhl.org
Web: http://www.vhl.org/

VHL (Von Hipple-Lindau Disease) Family Alliance's mission is to improve diagnosis, treatment, and quality of life for people with Von Hipple-Lindau Disease, serving individuals, families, and related medical professionals. They promote education of patients, families, the medical community, and the general public concerning the disease.

The Alliance has local support groups, you may call the 800 number or e-mail them for information on the local chapter nearest you and they will assist in starting a new support group in an area where none is presently available. They do parent-to-parent matching for anyone who writes describing their situation and requesting a match.

The alliance publishes a quarterly newsletter, VHL Family Forum, that is included in membership fees, and they have brochures available including,"What is VHL?," "Family Health Tree," and "The Patient Handbook." Their new parent packet contains each of their publications.

VHL Family Alliance has a bibliography of books and articles that are available to members for no charge. They collect information on physicians and make this list available to members, call for further details. The Alliance will also provide referrals to other resources/providers.

Where to go to Chat with Others?

vhlfa · VHL - von Hippel-Lindau
This is an open support forum for anyone interested in the exchange of information among individuals and families affected by von Hippel-Lindau Disease (VHL).

Learn More About It

Basic Facts About VHL
From the VHL Family Alliance

The VHL Handbook
What you Need to Know about VHL - A Reference Handbook for people with von Hippel-Lindau Disease, their families, and support personnel

Von Hippel Lindau Syndrome
National Center for Biotechnology Information

Von Hippel-Lindau Disease - NIH

GeneReviews: Von Hippel-Lindau Syndrome

VHL: A Genetic Disease From Snapshots of Science and Medicine

Von Hippel-Lindau
Atlas of Genetics and Cytogenetics in Oncology and Haematology

Von Hippel-Lindau
From eMedicine

Links

Von Hippel Lindau Syndrome Family Alliance

Von Hippel Lindau
From Contact a Family - United Kingdom

Danish VHL Association