October 16, 2012
This organization is a lifesaver for those of us with VHL and for the Family Members/Caregivers of those with VHL. With a small budget this organization provides support to anyone with VHL as well as providing grants for cancer research. Joyce Graff is always up to date and keeping everyone informed of the latest information on treatment options and what's going on in research. She is also ready to reach out with a helping to hand to anyone with questions about treatment, referrals to specialists or whatever they need.
How would you describe the help you got from this organization?
How likely are you to recommend this organization to a friend?
How do you feel you were treated by this organization?
When was your last experience with this nonprofit?
February 15, 2011
This organization was a godsend when I found out I had VHL. I was able to call the hotline and talk to someone who actually had VHL. They immediately sent me the VHL handbook and other information to help me and my doctors understand what type of care I needed. They also have a forum so you can talk to others with VHL. They award grants to researchers looking for a cure.
I've personally experienced the results of this organization in...
Knowledge of how to manage my illness. Support from others with VHL.
Ways to make it better...
If I had to make changes to this organization, I would...
I wouldn't change a thing.
Client Served & Recieve support and information when needed.
Review from Guidestar