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

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

January 24, 2022

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.

Discussing Hereditary Cancer, VHL Disease With One’s Family

November 02, 2021

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.

Life With von Hippel-Lindau Disease

August 03, 2021

Patients with this rare genetic condition develop tumors in various parts of their body, throughout their lifetime, requiring a multidisciplinary care team and constant screening and management.