Genetic Cancer Patients Report COVID-19 Crisis Impacts Medical Care

New research shows patients with von Hippel-Lindau (VHL) disease, a genetic oncological disorder, are experiencing delay and cancellation of important appointments and even surgery due to the COVID-19 public health crisis. For many people with rare diseases, these effects may be life-changing, particularly for otherwise young and healthy patients who may face irreversible damage as a result of delayed treatment. VHL, or von Hippel-Lindau disease, is a genetic disorder characterized by tumors in up to ten areas of the body. Under normal conditions, the VHL gene controls the cell's oxygen sensing mechanism, keeping cancerous tumors at bay. When the gene is missing or mutated, the body's tumor suppressor signaling does not function correctly. The tumors can be benign or cancerous, and appear and grow unpredictably throughout a patient's life.