VHL Family Alliance
2001 Beacon Street, Suite 208
Boston, MA 02135
(800) 767-4845
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.