July 6th Patient/Caregiver Call

Zoom / Online

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...

Free

July 8th Low/No Vision Call

Zoom / Online

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: What mental health practices have you found both successful and accessible? What practices do you...

Free

August 3rd Patient/Caregiver Call

Zoom / Online

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...

Free

Family Weekend 2026

Kimpton Everly Hotel 1800 Argyle Ave, Los Angeles, United States

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...

$50

August 12th Low/No Vision Call

Zoom / Online

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...

Free

September 9th Low/No Vision Call

Zoom / Online

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...

Free

September 14th Patient/Caregiver Call

Zoom / Online

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...

Free

October 5th Patient/Caregiver Call

Zoom / Online

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...

Free

October 14h Low/No Vision Call

Zoom / Online

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...

Free

November 2nd Patient/Caregiver Call

Zoom / Online

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...

Free

VHL Alliance Medical Symposium

Hyatt Regency Boston/Cambridge 575 Memorial Drive, Cambridge, MA, United States

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...

November 18th Low/No Vision Call

Zoom / Online

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...

Free