VHL FAMILY ALLIANCE
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December 7, 2012
Mi esposo fue diasnosticado con VHL este ano en Septiembre 2012 y no ha sido nada facil porque el nunca ha sido un hombre de enfermedad. Suponemos que tiene VHL por su madre que murio ya hace 12 y tenia un cyst en el cerebro. Tambien En el mes De Octubre me dijeron que mi hijo mas grande Tambien tenia el disease. Desde que todo esto comenzo me siento dichosa de saber que existe este web donde puedo encontrar mas persona con respuestas a este disease me siento mejor y con mas apoyo. Tambien he aprendido que Dios es muy pero muy grande y que nunca nos desampara. Ahora voy a comenzar a hablar con doctores en mi pais dominican republic acerca de este disease. Si alguien esta interesado en ayudarme con informacion para la republica dominca por favor mandar un email at delacruz1504@gmail.com. Gracias familia
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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?
Quite well
Would you recommend this group to a friend?
Definitely
When was your last experience with this nonprofit?
2012
November 3, 2012
I am vice president of VHL France. We all appreciate the role taken by VHL Family Alliance in supporting patients and their relatives and in supporting the different country associations in sharing experiences and expertise
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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?
Life-changing
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?
2003
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.
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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
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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
October 30, 2012
I was diagnose VHl over 20 years ago, my doctors knew very little about the disease so for many many years it was a case of fumbling in the dark. On a trip to Chicago , I was introduced to the VHL Family Alliance - it was such a relief to talk to other people in a similar situation. The VHL Family Alliance has been literally a "life saver", the support, experience, understanding and contact with groups are amazing - a friend whom you can turn to when in need of advice and help. With VHL we all have to manage our own health and that of our families and VHL Family alliance give us the information and knowledge to do that.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
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
October 29, 2012
WHat a support system !!! My husband's whole family has this horrible disease and so does my child. I need resources such as this to keep my sanity. Thanks so much !
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
October 29, 2012
I was diganosed with VHL 4 years ago and if it wasn't for VHL Family Alliance I don't know what I would have done. I'm from a country where the disease is extremely rare, the information is almost non existing and my life would have been a constant matter if I wouldn't have benefit from the help of VHL Alliance Family and its members. Great jos and keep up the good work! Thank you!
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Will you volunteer or donate to this organization?
Definitely
How much of an impact do you think this organization has?
Life-changing
When was your last experience with this nonprofit?
2012
October 28, 2012
The vhl family alliance has been a great support to my husband and our family. We have greatly benefitted from emotional support and education that this organization provides.
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How would you describe the help you got from this organization?
Life-changing
How likely are you to recommend this organization to a friend?
Definitely
How do you feel you were treated by this organization?
Very Well
When was your last experience with this nonprofit?
2012
October 28, 2012
VHL Family Alliance has meant the world to me. Through this alliance I have met friends who can relate to the unique world of vhl. Questions, concerns and ideas about vhl have been through this organization. Many thanks and kudos to VHL Family Alliance. Truly, you have helped me climb the mountain of VHL . THANKS!!!!!!!!!!!
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Would you volunteer for this group again?
Likely
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
October 28, 2012
VHLFA . . . .this is the most amazing organisation who supports all whose lives have been affected by this rare condition. Questions are answered, support given freely and with care, if you have VHL, or someone you love has VHL you will never walk alone as long as you are a part of this group.
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Will you volunteer or donate to this organization?
Likely
How much of an impact do you think this organization has?
A lot
When was your last experience with this nonprofit?
2012
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