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VHL ALLIANCE
June 11, 2010

The VHL 800 # was my first phone call on January 16th, 2006. This was the day that my son was the first ever in our family to be diagnosed with VHL. The only doctor that really knew what VHL was that first day was the neurosurgeon. I called to get some answers and find out about the disease and just to talk to someone. All of the staff at VHLFA is always extremely supportive and honestly a phone call away. I feel I have been blessed to have the VHLFA as a family member of someone with VHL and also a volunteer.

The Great!

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

It's been nice to see the VHLFA grow over the last 4 years and their direction never changes. I think a large part of awareness is because of the VHLFA.

Ways to make it better...

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

None

More feedback

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

The support you receive from all of the staff and also meeting new and existing physicians that are learning more about the disease.

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

Friendly and helpful. You really feel like you are part of the family.

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

Oh goodness, where to start. There are so many things we could expand on with that type of funding.

Ways to make it better...

N/A

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

Growing the clinical care centers and obtaining additional research funding.

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

I'm proud to be a volunteer for this organization

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2006

MY ROLE:
Client Served & Receive and give support to the VHL community.