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...
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...
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...
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: Who were the most supportive people when you were losing your sight or going through...
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: Is it important for the broader VHL community to understand the needs, differences, and similarities...
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: What mental health practices have you found both successful and accessible? What practices do you...
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...