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Lee H

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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I have been involved with the VHL Family Alliance since my son was diagnosed with the disease in 1992. It is my only source for meaningful information for this rare disease. The Family Alliance provides a wealth of resources in spite of its very tight budget. I have not seen any organization provide so much with so little. I am a huge fan of all they've done, with a special thanks to Joyce Graff, the engine that makes the VHL Family Alliance run.

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

I would not consider any medical options for my son's treatment without consulting the VHL Family Alliance. They are an incredible resource.

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

I wouldn't change a thing. It would be wonderful if they had additonal resources and if Joyce Graff were 40 years younger so she could continue in her role forever.

Role:  Client Served & I have been a contributor to this organization and a user of its medical information for many years. .