At the VHL Alliance, one of our top priorities is making sure that people with von Hippel-Lindau disease (VHL) have access to the best possible care. One of the most powerful ways this is done is through the VHL Virtual Tumor Board, a monthly program we host to connect medical professionals around the world treating VHL patients with leading VHL experts.
What Is the VHL Tumor Board?
The VHL Virtual Tumor Board is a professional-only live forum for medical providers, not for patients directly. Each month, doctors who are caring for people with VHL present challenging or complex cases to a panel of experienced VHL specialists. Together, these experts review the case, discuss treatment options, and share insights based on the latest research and clinical experience.
Each session includes several real cases, presented with slides and imaging, followed by an open discussion. The panel includes physicians and researchers who specialize in VHL and related tumors, including those familiar with the use of Welireg (belzutifan) and other emerging treatments.
Over the past year, about 32 cases were presented over the course of 8 Tumor Board sessions. Case presentations were from Argentina, Australia, Brazil, Canada, China, Poland, Finland, France, Greece, Netherlands, Vietnam, City of Hope, MD Anderson, MGH, St. Jude, UCLA, UTSW, UMichigan, UWashington, and more.
Why It Matters
Because VHL can affect so many parts of the body, it often requires a coordinated approach across multiple medical specialties. Not every hospital or clinic has access to a VHL expert. This is where the Tumor Board comes in.
By offering this space for collaboration and consultation, the VHL Alliance helps ensure that medical professionals everywhere can tap into the collective knowledge of top VHL specialists. This means better-informed decisions, more consistent care, and better outcomes for patients.
“This is one of the most impactful things the VHLA does for our families. Any clinician, anywhere in the world, is invited to join and present a case on behalf of a patient they treat. And any individual with VHL in the world can encourage their own physician to present on their behalf. It is the largest VHL Tumor Board of its kind in the world and we are looking to grow its strategic reach in the future.”
What Patients Can Do
While the Tumor Board is open only to medical professionals, it directly benefits patients. If you believe that your case could benefit from a second opinion or additional expert input, you can ask your provider if they would consider presenting your case at the VHL Alliance Virtual Tumor Board.
The next VHL Virtual Tumor board is on Oct 29th, and your physician can register through the VHL Alliance and receive support in preparing and presenting your case for expert review. This process allows your care team to access specialized insight while keeping your medical information secure and shared only between professionals. You can reach out to [email protected] for more information on this program.
Advancing the VHL Alliance Mission
The VHL Alliance Virtual Tumor Board supports our mission by connecting medical experts, advancing research, and improving care for every person affected by VHL. By helping doctors learn from one another and share knowledge across borders & specialties, we’re building a stronger, smarter VHL care network for everyone.
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