vhl alliance

MyVHL: Patient Natural History Study

Do you want to help find a cure?

Blue eyes. Black hair. Cancer. What else runs in your family?

Learn more about von Hippel-Lindau and help researchers unravel the mysteries of the disease.  Your information and input can help researchers better understand VHL – contributing to more promising research to improve the quality of life for patients living with VHL and ultimately, leading to a cure.

What is MyVHL? 

MyVHL is a multi-patient database which helps researchers identify patterns across VHL patients. MyVHL provides you –and researchers –with more complete information about VHL, like how your lifestyle, medications, and other factors impact the disease and quality of life. These insights help you better understand the condition and help researchers know where to focus their efforts.

Due to its rarity, there is less understanding of VHL and the factors that may have an impact. The data individuals provide in MyVHL helps researchers identify and uncover factors that may increase risk, inhibit or slow tumor growth, or lead to an effective cure.

DISCOVER how your unique journey can help others.

Help find a CURE for cancer through VHL.

Be a part of progress in RESEARCH.

Participate in MyVHL today!  Learn more about your VHL and contribute to finding a cure. And, when you complete the survey and upload your scans (or submit a Records Release form), a $50 donation will be made to the VHL Alliance.

Remember – your information can make a world of difference in finding a cure for VHL.


The success of MyVHL –and breakthroughs in treatments and ultimately a cure –require collaboration between researchers, doctors, and VHL patients –YOU!  Please take the time to participate in the study.  All of the information shared in this study will remain secure and confidential.