VHL Alliance | Advocacy Groups

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.”

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.

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

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

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.

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

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.

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.

FDA approval of breakthrough treatment brings welcome hope.

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.