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. Now available in Spanish. Select your preferred language on the registration form.

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Rare Disease Research

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

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Participating in This Study

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

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Join the Registry

Please create an account and provide consent to participate in the study.

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