VHL Alliance recognized Clinical Care Centers (CCCs) are committed to providing outstanding holistic, coordinated care for VHL patients.
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
Each CCC has a team that works together towards empowering VHL patients to find and receive the care they need.
If you think the place where you receive VHL care should be considered for this CCC program, please put us in touch with your doctor and/or send information to your doctor about the CCC program. Patient feedback shared with the VHLA is made anonymous and is always carefully considered when reviewing CCCs. Please note: all applications are reviewed by the Clinical Advisory Council and an institution’s acceptance into the program is not automatic.
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.
Please visit the Directory of Clinical Care Centers to see where CCCs are established in the US and abroad.
PLEASE NOTE: All of the medical facilities listed on this page have VHL CCC teams that have been evaluated and approved by VHL specialists comprising the Clinical Advisory Council. However, not all specialists at these facilities are on the CCC team. As such, you may very well encounter a physician working at an institution with a CCC that does *not* have experience with VHL. (You may also find specialists that have some experience with VHL but are not members of the CCC team that has been evaluated by the Clinical Advisory Council.) The VHL Alliance is *only* endorsing the VHL CCC team and its members. Please make sure to communicate with the CCC’s Point of Contact to verify that you receive care from specialists that have experience caring for VHL patients.