VHL Alliance

08/27/2026

Missed Family Weekend in Los Angeles? Don't worry - Our blog post has you covered!

Click here to read about Family Weekend 2026: https://vhl.org/los-angeles-three-days-one-community-vhl-alliance-family-weekend-2026/

08/27/2026

Meet Natalie from Pennsylvania. 💙

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

Natalie’s VHL journey began with severe head pain and a family history that led her to genetic testing.

MRIs revealed two tumors in her cerebellum, including one the size of a golf ball. She underwent brain surgery in 2020, experienced permanent hearing loss in her right ear, and faced a difficult recovery that included physical, occupational and speech therapy.

Less than a year later, Natalie returned to school to become a registered nurse and later passed the NCLEX on her first attempt.

In 2025, she faced another VHL-related challenge when a tumor was found in her eye.

Through every setback and uncertainty, Natalie continues choosing to move forward and live her life beyond VHL.

Thank you, Natalie, for sharing your story with the VHL community.

08/26/2026

North Texas Giving Day kicks off tomorrow, and we've unlocked a TRIPLE match!

Did you know that DFW has the second highest concentration of VHL activity in America?

There are over 600 individuals with VHL in DFW and upwards of 3,000 more are likely undiagnosed.

If you're located near the Dallas Fort Worth area there has never been a better time to support our mission! Learn more here: https://www.northtexasgivingday.org/organization/VHLAlliance

08/18/2026

Is there anything better than a VHL Alliance Family Weekend?!

Thank you to the VHL community for a wonderful weekend of connection and learning, and a massive thank you to our partners at UCLA for their support of this event.

We're already looking forward to Family Weekend 2027. More info to come soon!

08/06/2026

Meet Bobby

Voices of VHL and the VHL Alliance are proud to collaborate on the Faces of VHL series.

Bobby’s VHL journey began when symptoms in his arm and neck led to the discovery of a spinal cord hemangioblastoma. Since then, he has faced surgeries, kidney procedures, vision treatments, and the difficult realization that his son also inherited VHL.

Through it all, Bobby has chosen knowledge, positivity, and service—supporting others through the VHL Alliance, participating in research, and continuing to move forward with hope. 💙

07/31/2026

Voices of VHL and the VHL Alliance are proud to collaborate on the Faces of VHL series.

What began as a short trip to Maryland to help her boyfriend—now husband—settle into a new military duty station quickly became an unexpected medical journey. After experiencing severe dizziness, nausea, and weakness, doctors discovered tumors at the back of her brain. Further evaluation at Johns Hopkins confirmed VHL and multiple hemangioblastomas.

Although her journey is still new, she continues to navigate the daily fatigue with faith and the support of her husband, mother, family, and friends.

By sharing her story, she hopes to raise awareness of VHL and remind others facing this diagnosis that they are never alone. 💙

07/23/2026

💙 Meet Nicky from Canada.

Voices of VHL and the VHL Alliance are proud to collaborate on the Faces of VHL series, sharing real stories from the global VHL community to connect and inspire.

Growing up with VHL, Nicky experienced the isolation that can come with living with a rare disease. After losing her mother to VHL and later facing her own surgeries and complications, she found strength in something she never expected—a community that truly understood.

Today, she's on a mission to ensure that no one living with VHL has to walk this journey alone. Her story is one of grief, resilience, hope, and the power of connection.
Swipe to learn more about Nicky's journey. ➡️

07/21/2026

There’s nothing quite like being in a room where everyone understands life with VHL. 💙

VHL Family Weekend 2026 brings together patients, families, medical experts and advocates for a weekend filled with education, connection, support and hope.

📅 August 7–9, 2026
🔗 Register at https://vhl.org/vhla-event/family-weekend-2026/

Voices of VHL is an affiliated partner of the VHL Alliance.

07/21/2026

There’s nothing quite like being in a room where everyone understands life with VHL. 💙

VHL Family Weekend 2026 brings together patients, families, medical experts and advocates for a weekend filled with education, connection, support and hope.

📍 UCLA Luskin Conference Center
📅 August 7–9, 2026
🔗 Register at vhl.org/family-weekend

Voices of VHL is an affiliated partner of the VHL Alliance.

07/18/2026

Applications are open now for AICANcer’s AI-Literate Patient Advocate Program, a new training initiative designed to prepare cancer patient advocates to participate in conversations about how artificial intelligence is developed and used in oncology.

The inaugural cohort will bring patient perspectives to researchers, developers, clinical leaders, and policymakers, with a focus on responsible AI, diverse representation, and equitable cancer care. Participants will receive an honorarium for completing the training and for future engagement activities.

Learn more: https://www.aicancerpatient.org/
Apply: https://forms.gle/SKGZzyXg48voN4mL9

The rapid adoption of Artificial Intelligence (AI) in oncology brings an unexpected hero in the fight to save millions of lives. AI holds the promise to completely transform cancer care, help with accelerating drug discovery, detecting tumors earlier, attack cancer with an incredible precision, and....