VHL FAMILY ALLIANCE
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October 29, 2012
I was diagnosed with VHL almost two years ago. The only reason I got the genetic testing for VHL was because of the VHL Family Alliance. The information provided and the outpouring of support from this group has helped tremendously in guiding me to find proper treatment.
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Will you volunteer or donate to this organization beyond what is required of board members?
Definitely
How much of an impact do you think this organization has?
Life-changing
Will you tell others about this organization?
Definitely
When was your last experience with this nonprofit?
2012
June 7, 2010
I was first diagnosed with VHL in 1996 and, being only 22 at the time, came as a huge hit to my world. After searching through research reports, combing the library and talking with my doctors to learn more, I came across the VHL Family Alliance. It was a breath of fresh air - the resources for patients, families and the medical community, as well as supporters at large are phenomenal! The active pursuit of funding and promoting research to find a cure and increase the quality of life of patients is extraordinary; and the network of families and medical professionals is highly valuable. All of these factors, combined with a desire to give back to an organization that has given me so much drove me to get involved. I have always been proud to be a part of such a great organization and will long continue to work to make life better for patients and families by supporting, promoting and being involved in the VHL Family Alliance.
The Great!
I've personally experienced the results of this organization in...
education and outreach resources, promotion of research and being involved as a volunteer leader, both on a local and national level.
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How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
2010
June 6, 2010
VHL Family Alliance is an amazing organization that has given me the support to fight for my life in many aspects. The support of its staff and volunteers allows many to find the doctors they need. The work of this organization to support researchers to find a cure and to the patients and their families to find support is amazing.
The Great!
I've personally experienced the results of this organization in...
Medical support and direction. Support in others who have the same disease. This organization has helped open doors that were closed to me.
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What I've enjoyed the most about my experience with this nonprofit is...
The community and support
The kinds of staff and volunteers that I met were...
Helpful and encouraging.
If this organization had 10 million bucks, it could...
Support grants to find a cure for this disease and offer more support individuals with or families with VHL.
How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
May 10, 2010
This organization offers first hand personal references for those dealing with VHL. Well organized and run with dedicated volunteers and staff.
The Great!
I've personally experienced the results of this organization in...
Medical referrals and information
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How frequently have you been involved with the organization?
About every month
When was your last experience with this nonprofit?
2010
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