VHL Alliance

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.

05/19/2026

Boston is calling! ☎️

Join us for the 17th International VHL Medical Symposium in Boston, MA!

When: Nov 6-8, 2026
What: Experience three days of comprehensive programming designed to advance VHL research, improve patient outcomes, and strengthen our global community.

Learn more today at symposium.vhl.org

05/18/2026

The VHL Alliance is headed to the 2026 ASCO Annual Meeting!

We’re excited to connect with researchers, clinicians, advocates, and industry leaders working to shape the future of cancer care - and to stay close to the latest discoveries impacting the VHL community.

From the conversations around HIF-2a inhibitors to innovations in personalized medicine, we’re looking forward to learning, collaborating, and bringing key insights back to our community.

If you’ll be at ASCO, please reach out, we’d love to connect!

05/16/2026

It's time for the VHL Awareness Walk!

Join walkers around the country today as we raise awareness and critical funds for VHL research and patient support programs.

Don't forget to tag the Alliance in your walk content, and send any photos of your walk to [email protected]!

Let's go walk!

05/15/2026

After attending a VHL Alliance Family Weekend, genetic counseling student Kenzie Samsury was so inspired by the support and connection she witnessed within the VHL community that it ultimately shaped her graduate research on patient support organizations and rare disease care.

Read her story and reflections on the power of community here: https://vhl.org/how-the-vhl-community-inspired-a-future-genetic-counselor/