Join us for VHL Connect: Seattle on March 21st, 2026! Date: March 21st, 2026 Cost: $10 Location: 255 South King Street, 18th floor, Seattle, WA, 98104. We will be in Slalom Hawk Tower on the 18th floor, which is where the reception area is located. Note that there is a hotel connected to...
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: How do you strike the balance between asking for what you need and proving that...
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 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...
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, 2026 Where: Kimpton Everly Hotel1800 Argyle Ave, Los Angeles, California 90028 United States Click here...
