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Living with VHL, it’s easy to put everyone else first and to set your own needs aside.What if you didn’t have to?Join us...
10/13/2026

Living with VHL, it’s easy to put everyone else first and to set your own needs aside.

What if you didn’t have to?

Join us for “What About What I Need?”, a free, interactive community webinar hosted by Leona deVinne. Through this community conversation we’ll explore how to get clear on what you need and how to ask for it.

Tuesday, November 10
7–8 PM ET | Free
Register here: https://vhl.org/vhla-event/webinar-series-what-about-what-i-need/

Calling all early-career VHL researchers! 🔬Applications are open for the AACR Scholar-in-Training Award, including a ded...
10/07/2026

Calling all early-career VHL researchers! 🔬

Applications are open for the AACR Scholar-in-Training Award, including a dedicated award for VHL research sponsored by the VHL Alliance. Any VHL-related abstract is eligible.

Selected scholars receive:
- A $1,500 travel award to the AACR Annual Meeting in Orlando, FL
- Free meeting registration
- Special networking opportunities

Applicants must be AACR Associate Members. If you're not a member yet, apply now, because approval can take up to 30 days.

Deadline: November 10

🔗 Learn more and apply: https://www.aacr.org/professionals/meetings/aacr-travel-grants/scholar-in-training-awards-annual-meeting/

When you share what life with VHL is really like, people listen. That includes lawmakers.VHL is a program area within th...
10/02/2026

When you share what life with VHL is really like, people listen. That includes lawmakers.

VHL is a program area within the Department of Defense's Congressionally Directed Medical Research Program, and in fiscal year 2025 alone, three VHL research projects were funded for a total of more than $7 million. Stories from our community helped make that possible.

You don't need any policy experience to be an advocate. We'll give you the talking points. You bring your story.

Read our new blog post to learn more and find out how to get involved!

https://vhl.org/your-story-has-power-what-it-means-to-be-a-vhl-advocate/

Meet Alyssa, a 22-year-old from Ohio who turned her experience with VHL into a passion for helping others. 💚Faces of VHL...
10/01/2026

Meet Alyssa, a 22-year-old from Ohio who turned her experience with VHL into a passion for helping others. 💚

Faces of VHL is a collaboration between Voices of VHL and the VHL Alliance.

With a mom who also has VHL, Alyssa underwent genetic testing as a baby, confirming that she carried the gene mutation. At 12, a routine eye appointment revealed retinal angiomas. Since then, she has undergone numerous laser eye procedures and surgery to remove a right-sided pheochromocytoma at 16. She also lives with pancreatic neuroendocrine tumors and small hemangioblastomas in her cerebellum. Recently, she learned she has another pheochromocytoma on her left side and is figuring out treatment.

The uncertainty of what the next scan might reveal is one of her greatest challenges. Through it all, her mom, loving family and friends, and extremely supportive boyfriend help carry her through. Her boyfriend accompanies her to many appointments to help calm her nerves.

Her mom has undergone two brain surgeries and other procedures. Her maternal grandmother passed away from a brain tumor at 29, although it is unknown whether she had VHL.

Inspired by her own experiences, Alyssa completed college and earned her credentials to become a registered ultrasound technologist. Today, she works part-time at a hospital.

“I love being able to help people get the care they need, as I know how it feels to be in their shoes.” 💚

Congratulations to our partners at Eisai and Merck on the FDA approval of WELIREG (belzutifan) plus LENVIMA (lenvatinib)...
09/30/2026

Congratulations to our partners at Eisai and Merck on the FDA approval of WELIREG (belzutifan) plus LENVIMA (lenvatinib) for certain adults with advanced clear cell renal cell carcinoma after immunotherapy.

Belzutifan’s path traces back to decades of research into the VHL gene and how it regulates HIF-2α. VHL research can lead to progress well beyond our community! We look forward to the breakthroughs still to come.

Read more here: https://us.eisai.com/press-releases/us-fda-approves-welireg-belzutifan-plus-lenvima-lenvatinib-for-certain-previously-treated-adult-patients-with-advanced-renal-cell-carcinoma-with-a-clear-cell-component-ccrcc

Meet Sarah, 43, from North East UK. 💙Faces of VHL is a collaboration between Voices of VHL and the VHL Alliance.Sarah wa...
09/24/2026

Meet Sarah, 43, from North East UK. 💙

Faces of VHL is a collaboration between Voices of VHL and the VHL Alliance.
Sarah was diagnosed with VHL just before Christmas in 2015 after genetic testing was requested following two previous brain tumors. She still remembers hearing her then 2-year-old son giggling in the background as she received the news.

One of the hardest parts of Sarah’s journey has been learning that both of her children also have VHL and watching them face the uncertainty that comes with it.

Over time, repeated scans, results, new diagnoses and difficult decisions took a toll on the resilience she had always relied on. Through it all, Sarah credits her family, friends and her GP, Dr. Kate Grant, with helping her feel supported, understood and able to keep going.

Her story is a reminder that strength can look like perseverance, humor, vulnerability and allowing others to help carry the weight.

It's North Texas Giving Day!There are more than 600 people living with VHL in Dallas / Fort Worth and the surrounding co...
09/17/2026

It's North Texas Giving Day!

There are more than 600 people living with VHL in Dallas / Fort Worth and the surrounding counties, and an estimated 3,300 more who are likely undiagnosed. North Texas has the second highest concentration of VHL activity in the U.S.

No one needs to face VHL alone. Donate today to help us support families impacted by VHL right here in North Texas and your donation will be TRIPLED!

One generous donor is matching $2 for every dollar you give (up to $250). $10 becomes $30, $50 becomes $150, and beyond!

Give here: northtexasgivingday.org/organization/VHLAlliance

2026 VHLA Research Grant Program! Submit your Letter of Intent by November 20, 2026!The VHL Alliance is pleased to annou...
09/14/2026

2026 VHLA Research Grant Program!

Submit your Letter of Intent by November 20, 2026!

The VHL Alliance is pleased to announce a call for applications for our Pilot Grant ($25,000 for one year), Research Grant ($100,000 over two years), and Postdoctoral Fellowships ($100,000 over two years). Projects should be on topics relevant to von Hippel-Lindau disease and should contribute new insights into the basic biology of VHL, the development of new treatments for VHL, or improve VHL detection/prevention.

Applications will be accepted by invitation only, based on investigator-submitted Letters of Intent.

The LOI should be one full page in length (excluding references) and include the following:

- Name of the principal investigator (PI);
- Brief description of the PI’s qualifications to undertake the proposed project;
- The type of award being sought (i.e., Pilot, Research, or Postdoctoral Fellowship);
- Brief description of the project to be proposed, emphasizing the relevance to VHL disease. The description MUST include the following: project background, hypothesis, specific aims, significance to the field of VHL research, and/or impact on the care of VHL patients.

LOIs are due on November 20, 2026, and should be submitted to [email protected].

For more information, please visit www.vhl.org/research/grants.

Summary of Dates and Deadlines
November 20, 2026: Letter of Intent Deadline
Feb 12, 2027: Application Deadline
Mid-March 2027: Grant Application Review Session
May 1, 2027: Earliest Project Start Date

Meet Braeden, 19, from Columbus, Ohio. 💙Faces of VHL is a collaboration between Voices of VHL and the VHL Alliance.Braed...
09/12/2026

Meet Braeden, 19, from Columbus, Ohio. 💙

Faces of VHL is a collaboration between Voices of VHL and the VHL Alliance.

Braeden’s VHL journey began after losing vision in his left eye. An eye exam revealed a large retinal tumor, and further imaging showed multiple small masses in both kidneys.

Although his genetic test was negative, his medical findings met the clinical criteria for VHL, and his doctors believe he may be the first in his family with a de novo mutation.
Over the past two years, Braeden has undergone six surgeries along with repeated eye injections and laser treatments.

For him, one of the hardest parts of VHL is the mental toll of never knowing what the next scan may show. He copes by accepting the unpredictability and even embracing some of the “weirdness” that comes with living with such a rare condition.

Join us in Buffalo on October 2nd for VHL Connect: Roswell Park!Dr. Eric Kauffman and a moderated panel of VHL specialis...
09/10/2026

Join us in Buffalo on October 2nd for VHL Connect: Roswell Park!

Dr. Eric Kauffman and a moderated panel of VHL specialists will discuss the latest treatment options plus an open Q&A from fellow VHL family members during this lunch and learn.

Cost: Free!
Address: Roswell Park Comprehensive Cancer Center
Elm & Carlton Streets, Buffalo, NY 14263
Date: October 2nd, 2026
Time: Noon to 2 pm

Secure your spot here: https://vhl.app.neoncrm.com/forms/vhl-connect-roswell

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P. O. Box 844682
Boston, MA
02284

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Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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