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

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.

Patient Resources and Support for von Hippel-Lindau Disease

November 02, 2021

Video

CURE spoke with Stacy Lloyd, board member of the VHL Alliance, about VHL as a rare disease and resources available for patients to learn more.

FDA’s Welireg Approval A ‘Complete Game Changer’ for Certain Cancers Associated With VHL Disease

August 24, 2021

Article

The approval of Welireg, according to an expert at Massachusetts General Hospital, is “extremely important” and will “dramatically” change how certain von Hippel-Lindau-associated cancers are treated.

VHL Community Celebrates Historic Treatment

August 18, 2021

Article

FDA approval of breakthrough treatment brings welcome hope.

Life With von Hippel-Lindau Disease

August 03, 2021

Article

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.