Join the VHL Alliance on Thursday, July 30, at 7:00 p.m. ET for the VHL Veterans Panel. This webinar will feature longtime members of the VHL community sharing their personal journeys with Von Hippel-Lindau disease. Panelists will reflect on the lessons they have learned, the challenges they have faced, and the importance of...
First Monday of every month. All are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! This facilitated call takes place on the first...
The VHL Alliance invites you to join us for our annual Family Weekend, a unique opportunity to connect with the VHL community, hear from leading experts, and share experiences with others impacted by von Hippel-Lindau (VHL) disease. When: August 7-9, 2026Where: Kimpton Everly Hotel1800 Argyle Ave, Los Angeles, California 90028 United StatesClick here to secure a...
Second Wednesday of every month. Living with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. Our call topic: Style — fashion, cars, architecture, and more. We'll talk about how the world around us...
Second Wednesday of every month. Living with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. Our call topic: Annie Lapidus, a blind yoga instructor with VHL, will join us to talk about meditation...
First Monday of every month. *Please note that this call has been pushed back one week due to the holiday! All are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We...
First Monday of every month. All are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! This facilitated call takes place on the first...
Second Wednesday of every month. Living with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. Our call topic: How life as a blind person is different based on the age at which we...
First Monday of every month. All are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! This facilitated call takes place on the first...
Advancing Research, Treatment, and Care for Von Hippel-Lindau Disease Join leading researchers, clinicians, and advocates for groundbreaking discussions on VHL disease management and innovation. The 17th International VHL Medical Symposium, hosted by the VHL Alliance and Mass General Brigham, will bring scientists, clinicians, and advocates together for two days of collaboration, idea exchange, and thought leadership. This...
Second Wednesday of every month. *Please note that this call has been delayed one week due to Veterans Day! Living with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. Our call topic: We...
First Monday of every month. All are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! This facilitated call takes place on the first...
