vhl alliance

Seeking Support

People with a hereditary disease commonly experience a heightened sense of stress and sadness. This is even a greater risk in patients and families with VHL, because it is unpredictable. It can help to talk or write to others who are on the same journey.

In 2010, a research group in The Netherlands published research on the emotional impact of VHL. The study confirmed that VHL disease caused increased distress for VHL patients and their loved ones. Frequent worries about future development of VHL-related tumors affected nearly half of those studied. The Patient Natural History Study has also revealed that people with VHL, when compared with the general population, are much more likely to suffer from anxiety or have panic attacks.

VHL patients and caregivers are encouraged to seek help if they are struggling with feelings of distress. 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. It can be frightening to reach out, but it is worse to be alone.

Toll Free Hotline | 1.800.767.4845 x1
The Hotline Committee is made up of volunteers with years of experience dealing living with VHL. The Hotline is available, from 8 AM to 10 PM ET, 7 days a week. The Hotline volunteers rotate coverage to help you stay connected. Each of them has extensive personal experience with VHL.

Facilitated Discussion Groups

For Patients / Caregivers: First Monday of every month, at 8 PM ET
For Parents of VHLers: Third Monday of every other month at 8 PM ET
For VHLers with Low/No vision: Second Tuesday of every month at 7:30 PM ET

These discussions are facilitated by Leona deVinne, a trained life coach who also brings invaluable experience as a VHL patient and caregiver. Each discussion has a defined topic followed by a general discussion about thriving, not just surviving, VHL. For more information including call-in number and monthly schedule, please contact the VHL Alliance Office.

Better Together Peer Mentoring

Patients and caregivers of all ages are invited to participate in the VHL Alliance’s “Better Together” peer mentoring program. This is a great way to share your experiences and learn from other people in the VHL community. Please email VHLA if you are interested in participating or would like to learn more about the program. Since the VHL community is spread out across the world, peer-mentor pairs will likely use long distance communications (email, phone, video) instead of meeting in person. Caregivers will be paired with caregivers, and patients will be paired with patients. Minors must have permission from a parent/guardian to participate.

Social media groups for everyone

Check out our standards for our social media groups

Special focus online discussion groups

Regional Chapters

Regional Chapters exist throughout the US as a way of providing a local voice to the resources that the VHL Alliance for caregivers and patients. Send mail to the local contact person. Please note: all contacts are volunteers, who may sometimes be temporarily unavailable. If you do not receive a timely reply, please contact the VHL Alliance Office.

International Affiliates

International affiliates are located in many countries around the world. Like regional chapter leaders, they can help provide a local voice to the resources available for VHL patients in that specific country.