VHL Alliance

The VHL Alliance (VHLA) is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.

Latest from VHL Alliance

Welireg Made a von Hippel-Lindau Survivor Feel Like a 'Medical Miracle'

December 15, 2022

Podcast

When Sean Korbitz was a 20-year-old college student, his life trajectory changed with a rare cancer diagnosis, resulting in the removal of 40 tumors; fifteen years later, a new drug made him feel like a “medical miracle.”

VHL-Related Kidney Cancer Survivor Reflects on Decades of Change for the Rare Condition

January 24, 2022

Article

When Joseph Heisler was diagnosed with von Hippel-Lindau disease 30 years ago, there was hardly any information on the condition. Fast forward three decades, there is an FDA-approved drug and a handbook of information available in two languages.

Available Treatment Options for von Hippel-Lindau Disease

November 03, 2021

Video

CURE spoke with Stacy Lloyd, board member of the VHL Alliance, about the treatment options for patients with VHL.

The Basics of von Hippel-Lindau Disease

November 03, 2021

Video

CURE spoke with Stacy Lloyd, board member of the VHL Alliance, to better understand VHL and its impact on cancer.

Discussing Hereditary Cancer, VHL Disease With One’s Family

November 02, 2021

Video

As a part of its “Speaking Out” video series, CURE spoke with Stacy Lloyd on behalf of the VHL Alliance, about discussing hereditary cancer with family members and how a diagnosis can lead to earlier surveillance for the disease.

Disparities in von Hippel-Lindau Disease

November 02, 2021

Video

CURE spoke with Stacy Lloyd, board member of the VHL Alliance, about disparities seen in VHL and its patient population.