Download the VHL Handbook Today!

Recently diagnosed with VHL or just want to learn more? Fill out the form to access the VHL Handbook now. This handbook contains the most up-to-date information about diagnosing and treating VHL and is an essential guidebook for living and thriving with von Hippel Lindau.

Need assistance with something else? Whether you are a patient, caregiver, researcher, or physician, we want to hear from you. Get in touch today!

What is the VHL Alliance?

The VHL Alliance is a 501c3 non-profit focused on supporting patients, families, and caregivers affected by von Hippel Lindau disease (VHL). Founded in 1993, the VHL Alliance is the preeminent resource for patients, caregivers, researchers, and the medical community.

What we do:

Patient Support

We are the leading resource for VHL patients nationwide. In person events, monthly support calls, medical guidance, and more are available through the VHL Alliance. We are here to help.

VHL Research

Our VHL Research grant program has deployed more than $3 million in essential research grant funding since its inception.

Clinical Care Centers

Our network of recognized Clinical Care Centers are committed to providing outstanding holistic, coordinated care for VHL patients.

Testimonials:

Sean
VHL Patient

“For individuals who are recently diagnosed and don’t know where to go, reach out to the VHL Alliance. They are the best resource for information and support, including monthly caregiver calls and patient support groups. I am so grateful to the VHL Alliance for the work that they do and the sense of community they have cultivated.”

Nancy
VHL Patient

“I am a 36 year-old patient living with VHL. About seven years ago I attended my first family weekend - It was truly life changing. The support, understanding, and sense of community I found there was invaluable”

Need assistance with something else? Whether you are a patient, caregiver, researcher, or physician, we want to hear from you. Get in touch today!