Professional Resources

For healthcare professionals seeking advice on clinical issues, please contact the VHL Alliance at info@vhl.org or call 617.277.5667 x4. We will be happy to share your questions with other clinicians through our listserv. If you would like to request printed resources for your clinic, please email info@vhl.org.

VHL Surveillance Guidelines: Early detection, active surveillance and appropriate treatment can greatly reduce the most harmful consequences of this gene mutation

VHL Referral Criteria: Use this criteria to determine referrals for potential VHL patients.

VHL Genetic Mutations: List of VHL Genetic Mutations

Establish a Clinical Care Center: Apply to be a Clinical Care Center. Clinical Care Centers (CCCs) are hubs of expert clinical care for people living with VHL. VHLA established the CCC program to help people living with VHL obtain the best possible care from a medical team knowledgeable about this rare disease.

VHL Alliance’s Competitive Research Program: The VHL Alliance offers research grants. Learn more and apply.

The MyVHL: Patient Natural History Study: The VHL Alliance runs MyVHL, a patient natural history study. Learn more about the initiative and accessing data for research purposes.

Published literature on VHL through PracticeUpdate: There is a VHL specific PracticeUpdate. Sign up to receive the latest in VHL research to your inbox.