Your Story Has Power: What It Means to Be a VHL Advocate
October 1, 2026
Since we last shared an advocacy update, we’ve seen exactly what can happen when the VHL community raises its voice.
VHL Alliance
Los Angeles, Three Days, One Community: VHL Alliance Family Weekend 2026
August 24, 2026
There is a particular kind of relief that shows up on someone’s face when they walk into a room where
Expanding Our Reach: Navigating the VHL Clinical Care Network
July 8, 2026
Living with von Hippel-Lindau (VHL) disease often means navigating a complex healthcare landscape. Because VHL can impact multiple organ systems,
Introducing the 2026 VHL Alliance Grant Recipients
June 16, 2026
The VHL Alliance is proud to announce our 2026 research grant recipients. This year, we are excited to support three
How the VHL Community Inspired a Future Genetic Counselor
May 14, 2026
As part of VHL Awareness Month, the VHL Alliance is highlighting the many ways that connection, education, and community support
A Hundred Years of VHL Research (And What That Really Means)
April 13, 2026
This is a guest post written by Rachel Giles, President of VHL Europa This year marks something extraordinary for
ASCO GU 2026 Highlights: Progress in Kidney Cancer and VHL Research
March 11, 2026
What is ASCO GU? Every year, clinicians and researchers from around the world gather to share the newest discoveries in
How Advancements in Surgical Technology are Transforming VHL Patient Lives
February 10, 2026
For individuals and families living with Von Hippel-Lindau disease (VHL), the journey is often defined by a series of challenges.
Prioritizing Mental Health in the VHL Community
January 20, 2026
Did you know? January is Mental Wellness Month Living with Von Hippel–Lindau (VHL) disease can involve moments of uncertainty, difficult
Our 2025 Impact
December 10, 2025
As we look back on 2025, we’re reminded of how much progress is possible when our community comes together. The