• ORGANIZATION PROFILE
  • VHL ALLIANCE INC VHL ALLIANCE INC

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(42.27903,-71.16951)
 

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Mission Statement

The VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.

Description

Founded in 1993, the VHL Alliance (VHLA) is the world's leading organization supporting von Hippel-Lindau Syndrome. We are a 501(c)3 non profit dedicated to improving the lives and optimizing the treatment of those affected by VHL, while aggressively pursuing a cure.

Programmatic efforts include: regional and national educational meetings for different age groups, Clinical Care Centers (vhl.org/ccc), International VHL Medical/Research Symposium, research grant program, Clinical Advisory Council, Research Council, Virtual Tumor Board, collaboration with Elsevier’s PracticeUpdate, surveillance guidelines, patient natural history study (MyVHL), VHLApp, Hotline, telephone support groups, quarterly newsletter, VHL Handbook, Kids Handbook, informative monthly eblasts, wellness coaching program, and moderating Facebook support pages, as well as other social media outlets.

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