• 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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  • 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

    Volunteers are always needed to help educate and support people with VHL and increase VHL awareness. You can become a mentor, register for the databank, contribute to the tissue bank, donate, or fundraise on behalf of the VHLA. Contact the VHLA office.

    Calendar of Events

    October 18-19, 2014
    Rockville, Maryland

    Have Auction Items to Donate? CONTACT US!

    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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    Last Modified: September 23, 2014

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