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Phone: 800-767-4845
2001 Beacon Street, Suite 208
Boston
Massachusetts 02135
USA
Website

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Target demographics: Any person affected with VHL or any of the kinds of tumors that occur in VHL, their families, friends, and healthcare professionals.

Direct beneficiaries per year: more than 18,000 in 108 countries

Someone who had 3 hours of volunteer time could: Help organize and run an event in their local community, staff a booth at a health fair, participate in a walk or run to raise money for and awareness of VHL.

Geographic areas served: national and international

Programs: Toll-free telephone support hotline, online discussion groups in five languages, Quarterly newsletter, national and regional meetings, networking for physicians, clinical care centers, funding for research.  The VHL Handbook revision 4 published in 2013.

Mission:
To improve diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau and related tumor conditions.
Results:
We serve more than 8000 people in the United States, and over ten thousand more outside the United States, through a network of volunteers and clinical care centers in 26 countries.  We publish materials in 12 languages, and have online support groups in five languages.

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02/08/14
I was diagnosed wen I was 18 after 6 long years not knowing what was wrong. Im the only one in my family with the defective gene so realy looking for others like me because you know how it affects every day life. Xx... more »
10/09/13
I'm a family member of a VHL Warrior. We found VHLA earlier this year when going through another surgery. What a relief! First, the resources available (especially the handbook) have been invaluable! In addition to improving our own knowledge, we've been able to educate doctors in our area thanks to... more »
10/09/13
I was diagnosed with VHL in 1993 and became of the VHLFA shortly thereafter. The VHLFA has been the hub for patient education on the symptoms and monitoring of VHL and the backbone into research and establishing Clinical Care Center. The VHLFA is not only an organization but also a "community" where... more »
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Help organize and run an event in their local community, staff a booth at a health fair, participate in a walk or run to raise money for and awareness of VHL.

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