• 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...

    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...

    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...

    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
  • December 7th 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
  • December 9th 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: What...

    Free