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Brenna T.

219 profile views
1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

I was diagnosed when I was approximately 20 years old. I was in the Army, stationed in South Carolina and far from my family in California. I felt isolated, scared, and uncertain of what was going to happen to me. My mother had been diagnosed years before, and I had lived in fear of being diagnosed with the same disease. When my mother told me about the vhl alliance, I was skeptical, but pleasantly surprised once I signed up for the website. Having a rare disease is hard, especially when you are younger and have no idea what could happen. Everything seems worse than it really is, but the alliance helped me with my fears, and keeps me informed on the upcoming events and the advances in research. I have even given presentations at military bases to urge people to donate to the cancer research funds. I can't imagine going through a diagnosis and life without people like Joyce Graff and the vhl alliance.

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

my life and the way that I am able to gain advice and responses from others with my rare condition.

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

Broaden the number of conferences in more places so that others can join in.

Role:  Client Served & I received counseling services and continue to receive advice.