Supporting Mental Health in the VHL Community
As we kick off the new year, we’re here to remind you of the importance of prioritizing mental and emotional health. Living with von Hippel-Lindau (VHL) can bring unique challenges – We’ve curated a variety of resources and initiatives to support your mental health and help you connect with others who understand what it’s like to live with VHL.
One-on-One Wellness Coaching
Our Wellness Coaching Program is designed to provide personalized support tailored to your needs. Whether you’re navigating a new diagnosis, managing stress, or simply looking for strategies to enhance your overall well-being, our trained wellness coach is here to guide you, free of charge! Sessions are confidential and focus on empowering you to create meaningful goals and build resilience. Learn more and apply for your first session here.
Monthly Support Calls
Connecting with others who share similar VHL stories can be powerful. For this reason we offer monthly support calls for various groups within the VHL community:
- Patients with VHL: Share your journey, exchange advice, and find encouragement.
- Low / No Vision Community: A safe space for those navigating the unique challenges of vision loss.
- Parents of VHL Patients: (Bi-monthly) A place for parents to connect, share their experiences, and support one another.
These calls are led by experienced facilitators and provide a supportive, confidential environment for meaningful conversations. Visit our events page to find the schedule and join the call that fits your needs.
Upcoming Events: Young Adult Retreat & Family Weekend
Every year we offer two in person events designed to educate, inform, and support the VHL community. Mark your calendars for:
– The Young Adult Retreat: February 28 – March 2, 2025, in Phoenix, AZ. Hosted in partnership with the Mayo Clinic in Scottsdale, this retreat is designed for young adults (ages 21-36) to bond, share experiences, and access tailored workshops.
– Family Weekend: August 1-3, 2025, in Ann Arbor, MI, in collaboration with the University of Michigan. This weekend offers a mix of education, community-building, and fun activities for individuals and families impacted by VHL.
Both events provide unique opportunities to connect with peers and professionals who understand the VHL experience. Stay tuned for registration details and updates!
Leaning on Your Local Comprehensive Clinical Care Center (CCC)
Our Clinical Care Center (CCC) network is not only a hub for medical expertise but also a valuable resource for mental health support. Many CCCs offer access to social workers, psychologists, and counselors who specialize in the needs of individuals with rare conditions (like VHL!). Reach out to the CCC closest to you to explore the mental health services available to you and your family.
“As part of the Supportive Care and Integrative Oncology Department, our goal is to address each patient’s individual needs, plus their respective families. Our group consists of oncology certified nurses, social workers, dietitians, chaplains and a music therapist. Our team provides guidance, resources and education that will cater to patients’ physical, emotional, social, financial and spiritual needs. We serve as advocates and liaisons to all.”
Deo Bautista RN, BSN, OCN
UT Southwestern Medical Center
Taking the First Step
We know that reaching out for support can feel overwhelming, but taking that first step can make all the difference. Whether you’re connecting with a wellness coach, joining a support call, or attending an in-person event, know that the VHL Alliance is here to support you every step of the way.
This Informational Blog is supported in part by Merck Pharmaceutical
