vhl alliance


The VHL Alliance is proud to be the recipient of the Global Genes 2018 RARE Patient Impact Grant for the Health Wellness Coaching Training program for Clinical Care Centers.

The program is designed to help participants coach, engage, and empathize with patients with the goal of empowering patients to actively manage their health by making educated decisions. At the same time, through this program, participants will learn skills to enhance their own lives putting them in a better position to meet the needs of the patient.


The VHL Alliance is partnering with The Mighty to increase awareness through The Mighty’s extensive and wide reaching readership.

The VHL Alliance welcomes you to share your story on the VHLA’s home page on The Mighty. The Mighty is a story-based health community focused on increasing the general population’s knowledge of VHL and how it plays a role in finding a cure for cancer.

We encourage you, as a patient or caregiver, to submit a story to The Mighty so your VHL story can be shared. If you have any questions, please contact the VHLA office.


The VHL Patient Natural History Study (also known as Cancer in Our Genes International Patient Databank – CGIP) is a collaboration between the VHL Alliance and the National Organization of Rare Disorders (NORD).

VHLA is proud to have been the first Natural History Study launched through this important project acknowledged by the FDA.

Don’t let your information be the missing piece. Register and participate in the Databank today!



PracticeUpdate and VHL Alliance recently partnered to create the Von Hippel-Lindau Disease Spotlight, a new hub for expert-curated quality content. The spotlight includes journal scans and expert commentaries from multiple specialty areas and is dedicated to helping you stay current and improve patient care. Membership is free, and registration takes just a moment.