VHL Alliance
We Bring Heart, Soul & Science To The Fight
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Latest posts
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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)... The post How Belzutifan Helps VHL Retinal Tumors appeared first…
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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... The post Your Story Has Power: What It Means to Be a VHL Advocate…
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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... The post Los Angeles, Three Days, One Community: VHL Alliance Family Weekend 2026 appeared first on VHL Alliance .
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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... The post Expanding Our Reach: Navigating the VHL Clinical Care Network…
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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,... The post Introducing the 2026 VHL Alliance Grant Recipients appeared…
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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. ... The post How the VHL Community Inspired a Future Genetic Counselor appeared first on VHL Alliance .
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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... The post A Hundred Years of VHL Research (And What That Really Means) appeared first on VHL Alliance .
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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... The post ASCO GU 2026 Highlights: Progress in Kidney Cancer and VHL Research appeared first…
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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... The post How Advancements in Surgical Technology are Transforming VHL Patient Lives appeared…
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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... The post Prioritizing Mental Health in the VHL Community appeared first on…