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1 reviews

Review for VHL Alliance, Boston, MA, USA

Rating: 5 stars  

This Organization is a haven for those of us with VHL. When you deal with a rare disease it's often next to impossible to meet and talk to others who are dealing with the same issues as you. It's also quite possible that you are unable to find healthcare providers who have experience with your disease. This is a place where you can talk to, share concerns and find out about the latest treatments and advancements from others who also have VHL. Thank you Joyce and everyone else who is part of the VHL Family Alliance. Not only is the VHLFA here to support each and everyone one of us whether we have VHL, are care givers of those with VHL or just someone with a question, but you also raise money to give out grants for cancer research and keep in constant contact with the Doctors and Researchers that are working on a cure.

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

Having questions answered. Finding out about different treatment options and the results of them. Staying up to date on clinical trials that are currently open and those that will be opening.

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

I can't think of anything I would change.

What I've enjoyed the most about my experience with this nonprofit is...

Meeting and talking to others with VHL

The kinds of staff and volunteers that I met were...

Helpful and kind. You'll never meet a better bunch of people.

If this organization had 10 million bucks, it could...

Fund bigger research grants to help find a cure for cancer.

Ways to make it better...


In my opinion, the biggest challenges facing this organization are...

VHL is such a rare disease that most people have never heard of it. Most Doctors will never see or treat a patient with VHL in their career.

One thing I'd also say is that...

The cure for VHL will most likely also be the cure for many types of cancer.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Volunteer & Co-Chapter Chair, Oregon.