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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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Contact Us |
Please Join Us!
 
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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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