My Nonprofit Reviews
Review for VHL Alliance, Boston, MA, USA
I was diagnosed with VHL 2 years ago ( I was 33 ) after 2 brain and 1 spinal surgeries. When I was diagnosed I was just told what disease I have and I will have to be monitored. I went home and with "clear" mind started looking online what VHL is. The VHL Family Alliance was the only information I could find. When I typed VHL it was showing VH1 , not too encouraging ...... Thanks to VHL FAMILY ALLIANCE I got in touch with local VHL patients, found Doctors I need to see, found out where to get tested, really important things no one else told me. My son tested positive for VHL.....We are doing everything we can to support VHL FAMILY ALLIANCE to continue helping others like it helped me and finding a cure.
Thank you VHL FAMILY ALLIANCE for all that you do!
I've personally experienced the results of this organization in...
Helping me learn about VHL
If I had to make changes to this organization, I would...
Would not change anything