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 MyVHL: 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.

Wellness Coaching

VHLA’s Wellness Coaching program will give you the tools and techniques that will reduce stress, create ease, boost resilience and help increase the feeling of control. Click here to learn more. 

Facilitated Discussion Calls

VHL Patients / Caregivers Call:
First Monday of every month, at 8pm ET

Parents of VHLers Call:
Third Monday of every other month at 8pm ET

VHL Low/No Vision Call:
Second Wednesday of every month at 7:30pm 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 numbers and monthly schedule, please visit our events page or contact the VHL Alliance Office.

VHL Penpal Program

We know that being affected by VHL can often feel lonely or alienating–but you’re not alone! The VHL Penpal program is a great way to find support, share experiences, and learn from other members of the VHL community. Fill out the registration form here and the VHL Alliance will pair you up with a penpal. It’s up to you how you’d like to communicate: zoom, email, or even snail mail are great options!

Wellness Coaching Program

Having a chronic illness and navigating the complex needs associated with that, can be very challenging. There are proven tools and techniques that can create ease, reduce stress and help increase the feeling of control. That’s what the VHL Medical Coaching program provides; some well researched based tools to help VHL patients and caregivers manage their disease with greater ease, less stress, and anxiety. Click here to learn more or contact the VHL Alliance Office.

Regional Ambassadors

Regional Ambassadors exist throughout the US as a way of providing a local voice to the resources that the VHL Alliance for caregivers and patients.  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.