Basic Facts About VHL
Managing Your Health
Information for Health Care Professionals
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About the VHL Family Alliance
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Families, Friends, Physicians, & Researchers working together
to improve diagnosis, treatment, & quality of life for people affected by von Hippel-Lindau disease.

Caring...
An international network of family support groups

Sharing...
In person, on the phone, and through the VHL Family Forum

Learning...
From each other and with our physicians and medical teams

Educating...
Ourselves, the medical community, and the general public

Clinical Care Centers

Local Family Support Chapters

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Please Join Us!

  

Membership in the VHL Family Alliance is open to individuals, families, physicians, researchers, and other friends and healthcare professionals. It is only through this kind of collaboration that we can improve diagnosis, treatment, and quality of life for people affected by VHL.

We would like to encourage you to join this Alliance -- your "other family" -- as a source of support and practical connections that can assist doctors in doing their best the first time, and assist families in finding optimal care. Your membership and financial support help to sustain the services of the Alliance, providing information to families and physicians, and funding research. Our newsletter and meetings include the latest treatment information and provide a forum where families and health care professionals can learn from one another.

"I have to admit to being surprised at how much brighter the future looks since I posted on the VHL online forum and cannot express how grateful I am for the replies I have received." -- Ken C.

The VHL Family Alliance was founded in 1993 as a non-profit support organization for patients and families affected by von Hippel-Lindau disease (VHL). All medical professionals, friends, and interested persons are encouraged to join us in reaching our goal to improve diagnosis, treatment, and quality of life for people with von Hippel-Lindau.

Local chapters and affiliates in the U.S. and worldwide provide nearby support and regional meetings. Additional information is available through telephone support, websites and discussions on the internet, and websites and publications in many languages.

The VHL Family Alliance is supported by generous contributions from families, friends, health care professionals, and the general public. Your membership and/or contribution will help defray the cost of compiling information, delivering it by mail, telephone, and internet, and insuring that this service continues to be available to all who need it.

"We want to make sure that you get the best possible treatment today, and that increasingly better treatment options are available as soon as possible."

The only way we can learn more about VHL is to gather information from lots of people. Your experiences, your ideas, will help us all.

Come and learn from what has already been compiled, and add your own questions and ideas to help us all live better with VHL.

Your name and personal details are entirely confidential. Our mailing list is never rented nor sold.

Join Today!

  

Thank you!

Download our membership brochure

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