Blog
How Belzutifan Helps VHL Retinal Tumors
New research from the National Eye Institute brings encouraging news for families living with von Hippel-Lindau (VHL) disease. A published study in the journal Ophthalmology Retina shows that Welireg (belzutifan)
Your Story Has Power: What It Means to Be a VHL Advocate
Since we last shared an advocacy update, we’ve seen exactly what can happen when the VHL community raises its voice. VHL research opportunities expanded within the Department of Defense’s Congressionally
Los Angeles, Three Days, One Community: VHL Alliance Family Weekend 2026
There is a particular kind of relief that shows up on someone’s face when they walk into a room where they don’t have to explain what VHL is. That
Expanding Our Reach: Navigating the VHL Clinical Care Network
Living with von Hippel-Lindau (VHL) disease often means navigating a complex healthcare landscape. Because VHL can impact multiple organ systems, finding a medical team that understands the nuances of this
Introducing the 2026 VHL Alliance Grant Recipients
The VHL Alliance is proud to announce our 2026 research grant recipients. This year, we are excited to support three promising projects that focus on VHL-related hemangioblastomas, kidney tumor development,
How the VHL Community Inspired a Future Genetic Counselor
As part of VHL Awareness Month, the VHL Alliance is highlighting the many ways that connection, education, and community support can shape the lives of people affected by VHL.
A Hundred Years of VHL Research (And What That Really Means)
This is a guest post written by Rachel Giles, President of VHL Europa This year marks something extraordinary for our community. It has been 100 years since Arvid Lindau’s
ASCO GU 2026 Highlights: Progress in Kidney Cancer and VHL Research
What is ASCO GU? Every year, clinicians and researchers from around the world gather to share the newest discoveries in cancer research. One of the most important meetings for kidney
How Advancements in Surgical Technology are Transforming VHL Patient Lives
For individuals and families living with Von Hippel-Lindau disease (VHL), the journey is often defined by a series of challenges. One of the most significant has been the need for
Prioritizing Mental Health in the VHL Community
Did you know? January is Mental Wellness Month Living with Von Hippel–Lindau (VHL) disease can involve moments of uncertainty, difficult decisions, and a wide range of emotions. During Mental Wellness
Our 2025 Impact
As we look back on 2025, we’re reminded of how much progress is possible when our community comes together. The steps forward we made this year happened because of people
Highlights from the 2025 VHL Research Forum
Earlier this month, the VHL Alliance (with generous support from the Rath Family and Merck) hosted its first-ever VHL Research Forum in Charlotte, North Carolina. This event brought together a