Annual exams with
Radiologic surveillance of the brain,
spinal cord, and other vital organs2,3
Interventions and surgery as needed4
There are more than 35 VHL Clinical Care Centers in the United States that are committed to providing coordinated care for patients with VHL disease.
Due to the systemic and cyclical nature of VHL, patients endure a lifetime of monitoring and medical interventions.2,7-10
According to a 2018 report of the National Alliance for Caregiving, the unique demands of caring for loved ones with rare diseases, such as VHL disease, have the potential to disrupt caregivers’ lives beyond their care commitments.11