William G. Kaelin Jr., MD
2019 Nobel Prize in Medicine Winner

When you are studying about von Hippel-Lindau disease you are not just studying about [the]... disease...you are also now touching other diseases as well where we can use the VHL gene to understand what is happening.


The VHL Alliance is constantly striving to increase the level of VHL research. Once considered only “an obscure medical curiosity”, in reality, VHL is becoming one of the most important diseases in the study of cancer.

Latest Research

Understanding and finding a cure for VHL helps us find a cure for cancer since the same gene is involved in many types of cancer. The VHLA’s collaborations can help you keep abreast of the latest research.


Patient Natural History Study

VHLA partnered with the National Organization for Rare Diseases (NORD) to develop the Natural History Patient Study (also known as the Cancer is in Our Genes International Patient Database – CGIP) to help researchers better understand VHL and other forms of cancer, with the goal of finding better treatments, and ultimately, a cure.

Stay Updated

In order to assist you in providing the best care possible to people living with VHL, the VHL Alliance would like to keep you Up-to-Date on the newest VHL research, diagnosis, and treatment.

We Bring Heart, Soul & Science to the Fight.

We Bring Heart, Soul & Science to the Fight.