vhl alliance

Making a Diagnosis

Making a diagnosis is one of the first steps in helping patients thrive with VHL.


Has the patient been diagnosed with VHL?

If no, please consider using genetic testing and these suggested referral criteria developed by Dr. Othon Iliopoulos, sponsoring physician of the Comprehensive Clinical Care Center for VHL patients at Massachusetts General Hospital in Boston, MA. Note, these criteria are used to REFER patients. These are NOT criteria for clinical diagnosis of VHL.

If yes, please note that the VHL Alliance has established a Clinical Care Center (CCC) program which identifies institutions that are experienced in providing outstanding coordinated care for VHL patients. Contact information for each CCC is listed in the Clinical Care Center Directory.

For primary care providers of VHL patients:

Thank you for the important role you play in a VHL patient’s healthcare team. This 4-page “Quick Start Guide” outline the very basics about VHL. The VHL Handbook goes into great detail about VHL manifestations, treatments, and holistic care.

Even though a VHL patient may have a whole team of specialists, a primary care provider is essential.

The VHL Alliance also encourages all PCPs of VHL patients to collaborate with the specialist teams at VHL Clinical Care Centers and for the VHL Clinical Care Centers to keep PCPs updated on patient care. The patient receives the best care when all members of the healthcare team are working together.