vhl alliance

Seeking Support

Living with VHL is not always simple for both the patients, families and friends. VHL is a journey with many ups and downs. It can help to talk or interact with someone who is on the same journey. Join a support program. Pick up the phone and call, if only just to talk for a while, or join the online support group.


Other families with VHL are there to listen and to share their own experiences, which  may help  you  gain a  different perspective on the problem. Listen and learn, or join in the conversation. Participate in local support group meetings. It can be frightening to reach out, but it is worse to be alone.

For more information, please contact the office at office@vhl.org or 1.800.767.4848  x4.

Toll Free Hotline
The Hotline Committee is made up of volunteers with years of experience dealing living with VHL. You can speak 7 days a week. The Hotline volunteers rotate coverage to help you stay connected. Each of them has extensive personal experience with VHL.  1.800.767.4845, ext. 1, FREE

Patient/Caregiver Discussion Groups
First Monday of every month, at 8 PM EST.

Caregiver Discussion Groups
Third Monday every other month at 8 PM EST.

All discussion are run by Leona de Vinne, CPCC, ACC, trained facilitator and VHL patient.
There is a defined topic each month followed by a general discussion. For more information including telephone number, please contact the office at office@vhl.org or 1.800.767.4848  x4.

Low-No Vision Discussion Group
Second Monday of every month at 7:30 PM EST.

Better Together Peer Mentoring
Looking for someone to help guide you through your VHL journey or someone to whom you can talk and will understand? Do you want to be that person who helps out a fellow person in need? VHL partners matches mentors and mentees. These relationships can be just for a short period of time or a life-long friendship. The program is open to mentees of all ages.

Those interested in serving as mentors will be trained through a collaboration with the 4th Angel program giving you specific skills to better answer questions and be there for another member with VHL through part of the VHL journey.

Social Media
Inspire: www.inspire.com/groups/vhl-alliance
VHLA Facebook Fan Page: www.facebook.com/VHLAlliance
Facebook Discussion Group: VHL: Spreading Awareness of von Hippel-Lindau www.facebook.com/groups/VHLawareness
Facebook Group for Caregivers: www.facebook.com/groups/vhlcaregivers

Regional Chapters

International Affiliates