Causes: Cancer, Family Services, Health, Health Care, Human Services

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.

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

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.