VHL Alliance

06/18/2026

💙 This story is shared through a collaboration between Voices of VHL and the VHL Alliance, highlighting the experiences, challenges, and resilience of individuals and families affected by Von Hippel-Lindau (VHL) disease.

Living with VHL means learning to navigate uncertainty, resilience, and the moments in between. 💙

Cristina's journey has included surgeries, recovery, and the emotional weight that often comes with waiting for answers. Through it all, she continues to move forward with strength, intention, and gratitude for the life she continues to build beyond her diagnosis.

Her story is a reminder that healing is not always linear, and that even in the hardest moments, there can still be joy, connection, and hope.

Thank you, Cristina, for sharing your story with the Voices of VHL community and helping others feel seen and understood.

06/18/2026

Today is 🧡

This year’s theme, Kidney Cancer & Emotional Wellbeing, reminds us that emotional health is a vital part of the cancer journey, and support matters. Today we celebrate the strength of this community and the impact we can make together.

Together, our community doubled its KCA Challenge fundraising goal, raising nearly $160,000 in honor of the 81,000 people expected to hear the words “you have kidney cancer” this year. Every dollar supports research, education, advocacy, and resources for those affected by the disease.

Explore support and resources including:
🫶 Patient Navigator Program
💻 Virtual Support Groups
🎙️ Kidney Cancer Unfiltered Podcast
🩺 Treatment Center Finder
🌍 World Kidney Cancer Day resources

Visit worldkidneycancerday.org and kidneycancer.org to learn more. Thank you for raising awareness and supporting the kidney cancer community!

06/16/2026

We are proud to introduce 2026 VHL Alliance Research Grant recipient Dr. Anna Matynia of the University of Houston.

Dr. Matynia is studying how immune cells called macrophages interact with VHL-related hemangioblastomas. Using a new laboratory model that closely resembles retinal hemangioblastomas, her team will examine how these cells may help tumors survive and grow.

By better understanding the role of the immune system in hemangioblastoma development, this research could uncover new ways to control these tumors in the future.

Learn more about our 2026 grant recipients here: https://vhl.org/introducing-the-2026-vhl-alliance-grant-recipients/

06/11/2026

We’re proud to celebrate long time VHL community member and New York Times bestselling author Tom Rath on the release of his newest book, What’s the Point? Turning Purpose Into Your Daily Superpower.

Tom has spent his career helping people think more deeply about purpose, wellbeing, and the ways we contribute to the lives of others. In his new book he draws in part from his own experience living with VHL to explore how meaning is built through the choices we make each day.

We are grateful for Tom’s continued support of the VHL community and are excited to share that he will join us as a virtual guest speaker during the Young Adult Retreat at Family Weekend 2026 in Los Angeles.

Congratulations, Tom, and thank you for using your voice and experience to inspire others!

05/27/2026

Who can relate to Amy's story?

Living with VHL comes with uncertainty. How do you approach living with VHL?

05/26/2026

🇪🇸 Breaking News! Belzutifan will be made available via Spain's National Health System 🇪🇸

Congratulations to our partners in Spain for this monumental moment.

We look forward to working towards increased access to Belzutifan worldwide!

Read more here: https://www.sanidad.gob.es/areas/farmacia/precios/comisionInteministerial/acuerdosNotasInformativas/docs/Nota_informativa_CIPM_Mayo_2026.pdf?fbclid=IwdGRjcAR-lhZleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeQWrn-HHCpakraO5AOEWrUmy85rS1bwLusoyCUnM4KtFj1QjnigtL0Q-tglU_aem_wevBFpYarorjrId8g88LOw

05/23/2026

Are you located near the Baltimore - Washington DC region? We'd love to have you join us on Thursday, June 18th for VHL Night as the Baysox play the Richmond Flying Squirrels

Did you know that the National Institutes of Health and Johns Hopkins Medical Center treat the largest VHL patient population in the World?

Join us to raise awareness of VHL and honor the families and clinicians who navigate this condition. Click the link below to secure your free tickets!

When: Thursday, June 18th, 6:35 pm

Where: Baysox Stadium
4101 Crain Hwy
Bowie, MD 20716

Cost: FREE!

*Tickets will be assigned on a first come first served basis and will go fast!
Hurry and secure yours today

Register here: https://docs.google.com/forms/d/1RdVTYwvrczaMoAWUEO1gg0u5budHZM_W1eklrQVwRq8/edit

05/22/2026

Located Near Sioux Falls? Check out this community-led event happening later this month: the “Run to Cure VHL,” a 1-mile and 5K fun run/walk supporting VHL awareness and research. All proceeds from the event will benefit the VHL Alliance.

The event takes place on Saturday, May 30 at Riverdale Park in Sioux Falls, and organizers are welcoming runners, walkers, families, survivors, and supporters of all ages.

A huge thank you to the local organizers and advocates helping bring more awareness to VHL in their community!

Learn more & register here:

The Run to Cure VHL is on Saturday May 30, 2026. It includes the following events: The Run to Cure VHL 5k, The Run to Cure VHL 1 mile, 1 Mile Run Registration for Kids 10 and Under Only, 5k Run Registration for Kids 10 and Under Only, and Run To Cure VHL Survivor Sign up.

05/20/2026

Who else is ready for Family Weekend 2026?

We've secured a discounted room block at Kimpton Everly Hotel for all attendees. Click here to reserve your room today: https://api.neonemails.com/emails/tracking/click-link/oRnGhETxDspjnbY9bk-62dn33xQf7UU7ulEcp71x44A=/QO6euVRKgryx0fp8zd8xo1sZIDMNKVRG96W04aTws2o=

We can't wait to see you in Los Angeles Aug 7-9!

05/20/2026

A huge THANK YOU to everyone who participated in the VHL Awareness Walk last weekend 💙

With your help, we raised more than $75k to support critical VHL research & patient support programs.