VHL ALLIANCE Overview
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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.
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