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Lois

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1 reviews

Review for Vhl Alliance, Boston, MA, USA

Rating: 5 stars  

I have been a member of the VHL Family Alliance since 1994 serving as the Minnesota Chairman until 2008. Everyone works and gives of themselves 100% to help others with VHL and inform the public at the same time. I knew very little in 1982 when I had my first surgery for VHL but this organization has since improved everyone's knowledge by the handbook, meetings, 1-800 phone number, internet information site, newsletter, printed brochures and a new member packet loaded with information. Since VHL is a rare disease and is undiagnosed for many families, it is very important that many doctors that deal with the eyes, brain, spinal cord, adrenal glands, kidneys also become familiar with making the correct diagnosis. The VHL Family Alliance has done everything possible in a 24 hour day, 365 days a year to achieve its goal and deserves a big pat on the back. Congratulations to all the Board Members, State Chairmans, Fundraisers who spend so many hours promoting such a wonderful and worthwhile organization.

Role:  General Member of the Public & Served as State Chair for 17 years, held meetings, answered 1 800 telephone number and talked with 100's of people with VHL. .