VHL FAMILY ALLIANCE
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February 16, 2011
The VHL Family Alliance has taken on and provided support with the most crucial elements surrounding the VHL disease and how it affects the patients, their families, friends, and doctors. The Alliance has been instrumental in getting the word out to the general public about this less common disease and with that, garnering interest and support. We are so grateful for all of its continued efforts!
The Great!
I've personally experienced the results of this organization in...
The call to action to participate in activities to spread the word about the VHL disease, inform the public about it, and garner support and interest among as many persons as possible.
Ways to make it better...
If I had to make changes to this organization, I would...
I'm not sure of what changes I could make to improve the organization.
February 15, 2011
Our son was diagnosed with VHL this year, and the doctors at Johns Hopkins referred us to the VHL Family Alliance. I have been very impressed at how responsive, compassionate, and effective this group is. They operate on a shoestring budget, and use every dollar they receive to fund research on better diagnosis, treatment, and a cure for VHL. In addition, they are a lifeline to individuals and families coming to terms with this rare genetic disorder.
The Great!
I've personally experienced the results of this organization in...
their response to my inquiries and requests for materials about VHL
Ways to make it better...
If I had to make changes to this organization, I would...
Nothing that I know of at present, except give them a million dollars!
February 15, 2011
The VHLFA has been an endless source of knowledge for this very rare disease. There is power in knowledege which deminishes fear.
Thank you to the staff at VHL Family Alliance!
The Great!
I've personally experienced the results of this organization in...
Resources regarding knowledgable doctors.
Ways to make it better...
If I had to make changes to this organization, I would...
Figure out how to raise more money to fund research for a cure!
October 30, 2012
I am so thankful to have the VHLFA as a valued resource and partner in my son's medical care! I am counting on the medical research to lead to a cure for VHL.
More feedback...
Would you volunteer for this group again?
Definitely
For the time you spent, how much of an impact did you feel your work or activity had?
A lot
Did the organization use your time wisely?
Very Well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
June 4, 2010
VHLFA has been such an awesome resource of support both emotionally and practically! When local doctors wanted to remove my son's adrenal glands, they were there to explain to me why that was not a good course of treatment for someone with VHL. I have also met others with similiar health issues, who have been amazing examples of strength. I value the people involved with VHLFA - it is good to know you don't have to walk this road alone!
The Great!
I've personally experienced the results of this organization in...
Support and medical research
More feedback...
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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