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...
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...
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...
