Clinical Care Centers are hubs of comprehensive clinical care for people living with VHL. VHLA established the Clinical Care Centers program to enable people living with VHL to obtain the best possible care from a medical team knowledgeable about this rare disease. Clinical Care Centers provide effective coordination of care, promote timely screenings and serve as a source of information and support.
Goals of the Clinical Care Program
- To improve diagnosis and treatment of VHL
- To provide coordination of care across medical specialties
- To provide resource centers for patients and physicians who are new to VHL
- To provide a ready channel for communicating advances to these centers of expertise
- To provide a model that can be replicated elsewhere.