• Vision and Mission

    VISION: VHLA envisions a cure for VHL

     
    MISSION: VHLA is dedicated to research, education, and support to improve diagnosis, treatment, and quality of life for those affected by VHL.
     
    VHL or von Hippel-Lindau is a genetic form of cancer. VHL patients battle a series of tumors throughout their lives. The VHL gene is involved in many other forms of cancer. Finding a cure for VHL will play a vital role in curing!

  • Patient Testimonials

    The VHL 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 Alliance. Truly, you have helped me climb the mountain of VHL.

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  • ABOUT VON HIPPEL-LINDAU (VHL)

  • VHL ALLIANCE HIGHLIGHTS

  • HELP US UNCOVER A CURE

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  • WHAT’S NEW AT VHLA

    FDA recognizes VHLA's Cancer in Our Genes International Patient (CGIP) Databank!
    SEE EXCERPTS
    SEE FDA BLOG

    NEW! VHLA Mentor Program

    Looking for someone to help guide you through your VHL journey or someone to whom you can talk and will understand? Find out how

    Interested in being that guide and understanding person? Find out how

    VHLA Awards $125,000 in Grant Money

    Research is essential to reach our vision of finding a cure for VHL. With your help, in 2014, the VHL Alliance was able to take one more step closer to that dream.

    Othon Iliopoulos, MD, PhD

    and


    Danny Segal. PhD

    LEARN ABOUT THEIR RESEARCH

    READ THEIR BIOS

    Important Changes to Screening Guidelines

    The VHL Alliance has learned that the current brain and spinal cord guidelines are a barrier to some patients receiving insurance authorization or coverage for MRIs of the spine/brain. Here are the updates:

    • CNS MRIs should include brain, cervical, thoracic, and lumbar spine
    • Scans should be ordered as no less than a 1.5T MRI with and without contrast

    This is now on the website and online version of the VHL Handbook. The next edition of the print version will include this update.
    For complete screening guidelines, click here

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    ©2014 by The VHL Alliance. All Rights Reserved.
    The VHL Alliance is a tax exempt 503(c)3 corporation
    Last Modified: September 23, 2014




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