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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I was first diagnosed with VHL in 1996 and, being only 22 at the time, came as a huge hit to my world. After searching through research reports, combing the library and talking with my doctors to learn more, I came across the VHL Family Alliance. It was a breath of fresh air - the resources for patients, families and the medical community, as well as supporters at large are phenomenal! The active pursuit of funding and promoting research to find a cure and increase the quality of life of patients is extraordinary; and the network of families and medical professionals is highly valuable. All of these factors, combined with a desire to give back to an organization that has given me so much drove me to get involved. I have always been proud to be a part of such a great organization and will long continue to work to make life better for patients and families by supporting, promoting and being involved in the VHL Family Alliance.

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

education and outreach resources, promotion of research and being involved as a volunteer leader, both on a local and national level.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Board Member & I took the opportunity to get involved.