February 15, 2011
I have a daughter who had a hemangioblastoma this past April. So far, she shows no other signs of VHL; and we are arranging the test to hopefully rule it out. However, this has caused us to become aware of this disease and to help in any way to find a cure! The VHL Alliance has been fabulous at providing information and support that we haven't been able to find elsewhere. They are encouraging to individuals facing this disease, and working hard to do what it takes to inform the public, and support finding an end to this disease. Thank you VHL Alliance!!
I've personally experienced the results of this organization in...
Receving precious information that has made us aware of our need to have our daughter tested, has been encouraging and supportive and has directed us to things such as finding VHL clinics, testing sites, and information to provide our doctors.
Ways to make it better...
If I had to make changes to this organization, I would...
I can't think of any.
General Member of the Public & I'm not sure what this is really looking for.
Review from Guidestar