MyVHL: Patient Natural History Study


This is a registry for patients with VHL and related disorders. It’s completely free for patients to participate. All information entered is private, confidential and secure. No identifying information will ever be shared.

For more information about how to register, click here.

For Researchers

Drive Research

This is a unique rare disease patient registry. Are you interested in using our data to further your rare disease research?

For Patients

Get Involved

Information collected during this study may be used to help provide opportunities for patients and researchers to collaborate in the rare disease community.