Home Patients/Caregivers VHL Research Health Professionals About VHLA Ways to Help Contact Us 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. Curing VHL is one step closer to curing cancer! Faces of VHL 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. From Great NonProfits ABOUT VON HIPPEL-LINDAU (VHL) Previous Next VHL ALLIANCE HIGHLIGHTS How many participants have signed up International VHL Medical Symposium 2014, Madrid, October 23-25, 2014 HELP US UNCOVER A CURE 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 OTHER WAYS TO GET INVOLVED 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 ANNUAL FAMILY MEETING: SEE AGENDA 3rd Annual BENEFIT DINNER & AUCTION: SEE DETAILS TEAM VHL 5K RUN/WALK: SEE DETAILS 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 ©2014 by The VHL Alliance. All Rights Reserved. The VHL Alliance is a tax exempt 503(c)3 corporation Last Modified: February 4, 2014 This site complies with the HONcode standard for trustworthy health information: verify here. © 2014 VHL Alliance ↑ Website developed by Ky Inthavong