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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.

I've personally experienced the results of this organization in...

Results have been achieved by helping other people with VHL and increasing our membership nation wide. A correct diagnosis is very important for the welfare of the patient with VHL to get the correct testing and having the necessary surgery with someone that knows about VHL.

If I had to make changes to this organization, I would...

I can not think of any changes I would make to the VHL Family Alliance as it has changed in many ways over the years. There goal was to make VHL stand for a Very Happy Life for everyone with VHL.

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. .