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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

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 was cancer and then learned it eas a hemangioma. She was blind in her left eye. We learned that we have people who helped us. We got help and were lead to testing for all of us finding that myself and three of my children of five have VHL. Since we have all had Pheochromosytoma tumors removed and some of us two surgeries. The alliance has been there to catch my tears and direct me and help me learn about everything.

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

the fact that I and my children have the disease ...

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

give more of my time.

Role:  Client Served & VHL Alliance.