VHL FAMILY ALLIANCE
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Phone: 800-767-4845
TOP-RATED 2011
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Target demographics: Any person affected with VHL or any of the kinds of tumors that occur in VHL, their families, friends, and healthcare professionals.
Direct beneficiaries per year: more than 18,000 in 106 countries
Someone who had 3 hours of volunteer time could: Help organize and run an event in their local community, staff a booth at a health fair, participate in a walk or run to raise money for and awareness of VHL.
Geographic areas served: national and international
Mission:
To improve diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau and related tumor conditions.
Results:
We serve more than 8000 people in the United States, and over ten thousand more outside the United States, through a network of volunteers and clinical care centers in 26 countries. We publish materials in 12 languages, and have online support groups in five languages.
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susan
02/22/11
Myself and two out of my three children have VHL. The VHL Family Alliance has walked me through this disease since I was first diagnosed 20 years ago. The information on Vhl and screening is priceless to me and my doctors. So many times I have not felt that my doctors understand the disease and VHL ...
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Bridget
02/22/11
I and three of my five children have VHL. The VHL Alliance has been three for me from the beginning when I first found out about our disease in 1992 when my daughter of four at the time, came home from preschool and I received a call from her teacher saying she was blind in one eye. We thought it ...
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VHLMD
02/21/11
I am a physican working with VHL patients and patients with many other genetic diseases. The VHL FA is most helpful and best organized genetic support group of any kind. I wish patients with other genetic disorders had a support group as well organized and useful as the VHL FA...
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