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: Confidence: when do we feel it, and when do we feel the lack of it?...
Managing Von Hippel-Lindau disease (VHL) requires more than treating individual tumors—it demands a carefully coordinated approach to care. Because VHL can affect multiple organ systems, patients benefit most when their care is managed by a multidisciplinary team that communicates and collaborates effectively. Join the VHL Alliance for our upcoming webinar, The Importance of Coordinated...
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...
When: December 6, 2025 | 8:30 AM – 2:00 PM ET Where: Hilton Millennium Center, Atlanta 2301 Sullivan Rd, College Park, GA 30337 Cost: $10 (includes lunch) Join the VHL Alliance in Atlanta for VHL Connect, an in-person event designed to bring together people living with VHL, their families, and leading experts in the...
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...
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: Bucket lists, goals, achievements, accomplishments, etc. All are welcome to join—whether you have questions...
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 blindness or VHL related items would it be critical for you to pack in...
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: Household management: How do you do Home upkeep and maintenance? If you do it yourself,...
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...
