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Parents of VHLers: Navigating Care, Emotions, and Growing Independence

Zoom / Online

Date & Time: May 6, 2026 at 6:00 PM ET Location: Virtual (Zoom) Registration link: https://us02web.zoom.us/meeting/register/8C0h7JYFRKmXUjoeB184BA#/   Parenting a child with VHL comes with unique challenges, from balancing complex medical care to managing uncertainty and supporting your child’s emotional well-being at every stage. This webinar is designed specifically for parents and caregivers who are navigating...

Free

May 4th 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

Avances en la enfermedad de VHL y la investigación del cáncer renal: De la biología a nuevas terapias

Zoom / Online

  Únase a la Alianza VHL para un seminario web informativo y atractivo el 13 de abril a las 6:00 p.m. (ET), presentado por el reconocido investigador y médico James Brugarolas, M.D., Ph.D.   En esta sesión, el Dr. Brugarolas compartirá los últimos avances en la investigación de la enfermedad de Von Hippel-Lindau (VHL), incluyendo...

Free

April 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: How do you strike the balance between asking for what you need and proving that...

Free

April 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

March 11th 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: Household management: How do you do Home upkeep and maintenance? If you do it yourself,...

Free

March 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

Feb 11th 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 blindness or VHL related items would it be critical for you to pack in...

Free

February 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

January 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: Bucket lists, goals, achievements, accomplishments, etc.   All are welcome to join—whether you have questions...

Free

January 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 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: Friendships   All are welcome to join—whether you have questions or just want to find...

Free