Sunday, August 22, 2010

VHL Family Alliance

VHL Family Alliance
2001 Beacon St, Suite 208
Boston, MA 02135-7787 USA

Tel: +1 800 767-4845


The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. Local family support chapters exist in regions of the U.S. Local chapter meetings are scheduled periodically. International VHL Support Organizations are established on six continents.

We are strong because of our many volunteers, mostly families living with VHL, health professionals, and friends. We are in touch with more than 14,500 affected people in 102 countries, with highest growth currently in Spanish-speaking countries.

Through the generosity of our members and friends, and a number of special grants, we have been able to provide a number of key services in North America, Germany and France, and to a lesser degree in a number of other countries. We do not receive any state or federal funding. No one source can do the entire job. It takes each person, giving what they can, contributing ideas and effort as well as funding, to make it all happen.

Volunteers answer the telephone hotline in three languages in North America, and in local languages in a number of other countries. Meet the North American hotline team.

Our Online services have grown beyond just the website. They include online discussion groups in seven languages, moderated by a group of volunteers who make sure that people get correct information and timely responses. We are grateful to eDoxs for spam and virus protection for all our online volunteers, and to Dr.Backup for protection of our office documents.

Our Handbook, completely updated in 2005, was first published 1993, revised 1997 and 1999.

Clinical Care Centers cooperate with institutions in 9 countries.

The VHL Tissue Bank, in cooperation with NDRI ( Tissue banks also exist with Dr. Richard in Paris, France, and with Dr. Maher in Birmingham, England.

There are chapters in the geographic regions of the United States, and in twelve other countries. There are contact people in additional areas where there is not yet any formal organization. Refer to the list of U.S. Chapters & International Affiliates, or call or write to a contact person near you.

We have a Speakers' Bureau, and are frequently represented at regional, national, and international meetings on genetics, rare disease, ethics and research, and various medical topics.

We sponsor regional Patient/Provider Conferences, where the families share their experiences, and a biennial Medical Symposium where the health care professionals and researchers share their expertise, and we all learn. The 2010 Symposium will be held in Rio de Janeiro, October 23-24, 2010

Your memberships and Donations are always gratefully received.

Donations for Research and Education

Available Publications, Books, and Shirts

Because we work hard to keep our overhead expenses low, we are able to apply nearly all of your money directly to services and research grants. Our Annual Reports are available:

Annual reports and IRS 990's for 2009 and prior years

Most importantly, we — everyone in the VHL Family Alliance — are active members in a symbiotic partnership among families, friends, health professionals and researchers and are making progress in understanding how VHL works, and what tactics might be helpful in moderating the course of the disease. It's only a start, but it's a great deal more than we've ever had before. With your help, we will advance farther in the next year.

We are delighted to welcome you to the VHLFA Web Service, and hope that you will find whatever you need here. If not, please send us questions to

— VHL Family Alliance Board of Directors and Medical Advisory Board.

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