vhl alliance

Establish a Clinical Care Center

Clinical Care Centers (CCCs) are hubs of expert clinical care for people living with VHL. VHLA established the CCC program to help people living with VHL obtain the best possible care from a medical team knowledgeable about this rare disease.

The VHLA Clinical Care Center program is designed to help medical teams provide effective coordination of care, promote timely screenings, and serve as a source of information and support for patients/caregivers as well as the broader VHL medical community.

There are two categories of care centers: Clinical Care Center (CCC) and Comprehensive Clinical Care Center (CCCC). In addition to having a team with a few more specialists, Comprehensive Centers have a proven track record of at least 2 years as a high functioning CCC. Each CCC or CCCC is further identified as an institution that provides pediatric and/or adult care so patients and referring physicians can more easily recognize where to find expert care.

For more information about these classifications and how the application process works, please review the CCC application.