July 7, 2010
Having a rare disease can be overwhelming! Because VHL is so unique, no one can really understand the questions and concerns you have. Finding the VHL family alliance was a godsend. From the great handbook which details all the testing, to the newsletters and bulletin board, it has all been a great help.
I've personally experienced the results of this organization in...
the overall knowledge of my disease and the comfort in knowing other peoples experiences in dealing with this disease.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
MY ROLE:Client Served & I received life saving information on my rare disease.