vhl alliance

Communicating a Diagnosis

A diagnosis of VHL disease can be frightening to patients. It is important to address the patient’s physical needs while remembering to also be sensitive to the psychosocial toll that VHL can take on them.


Never forget that you are communicating to people, emotional beings who have hopes for the future and may be very frightened by a VHL diagnosis. There are publications documenting that VHL patients suffer from anxiety and panic attacks at a much higher rate than the general population. These conclusions have also been supported by the data from the VHL Patient Natural History Study.

Communicating a diagnosis to a person is not a textbook exercise. Please encourage each patient with VHL (as well as their families!) to connect with the VHL Alliance. There are many free resources for patients and caregivers of all ages including a peer mentor program, discussion calls facilitated by a trained life coach, and many forums on social media. Patients can also connect in-person at the Annual Family Weekend, the Young Adult Retreat and more.

Finally, when communicating a diagnosis with a patient, please reinforce the importance of adhering to the Active Surveillance Guidelines and participating in the VHL Natural History Patient Study.

Active surveillance is important for anyone living with a chronic disease, and it is especially important for people living with VHL disease given the unpredictability of the condition. In 2017, VHL patients no longer need to aim to just survive; they can thrive with this disease if it is well-managed.

These advancements in care for VHL patients have been made possible through extensive research. Now, patients have an opportunity to directly contribute to this important research by participating in the VHL Natural History Patient Study. This enables researchers to develop even more effective treatments and hopefully one day a cure for VHL.