The Annual Family Weekend is hosted in the fall and brings patients, families, and clinicians together for a weekend packed with clinical education and lively discussions that strive to address many of the facets of VHL that go beyond a clinical diagnosis.
There is also a fundraising dinner on Friday as well as special events for teens and young adults with VHL on Saturday and a fun 5k run/walk on Sunday. Many of the clinical presentations on Saturday are given by the specialists that comprise the VHL team at the hosting Clinical Care Center.
Healthcare professionals who care for VHL patients and healthcare students (especially those in genetic counseling, nursing, or medicine) are welcome to attend! Please contact the VHL Alliance Office for more information or to register for any of the activities.
Please visit our library of past presentations to learn more detailed information about each VHL manifestation as well as the psychosocial aspects of VHL which impact patients and caregivers.