VHL Alliance

October 5th Patient/Caregiver Call
2026-10-05 20:00 - 21:00 (America/New_York) | 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 Monday of every month at 8 PM ET.

Call topic:
What I Wish Others Understood About VHL
Discussing common misconceptions about VHL and sharing ways to help friends, family, healthcare providers, and others better understand the realities of living with the condition.

If you would like to join the call list please click here to register.

October 14h Low/No Vision Call
2026-10-14 19:30 - 20:30 | 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 life as a blind person is different based on the age at which we lost our sight.

If you are blind or visually impaired as a result of VHL, we welcome you to participate on the low and no vision call. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion!

This facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET.

If you would like to join the call list please click here to register.

November 2nd Patient/Caregiver Call
2026-11-02 20:00 - 21:00 | 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 Monday of every month at 8 PM ET.

Call topic:
Navigating Independence and Asking for Help
Discussing the balance between self-sufficiency and accepting support, including how patients and caregivers can communicate needs effectively.

If you would like to join the call list please click here to register.

VHL Alliance Medical Symposium
2026-11-06 - 2026-11-08 | Hyatt Regency Boston/Cambridge, 575 Memorial Drive, Cambridge, MA, 02139, United States
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 premier event features cutting-edge presentations, collaborative workshops, and networking opportunities designed to accelerate progress in understanding and treating VHL disease.

Where: Boston, MA
When: Nov 6-8, 2026

This biennial event, hosted by the VHL Alliance, is one of the most important gatherings in our field. It’s where researchers, clinicians, and advocates come together to share the latest discoveries, explore emerging treatments, and collaborate on what’s next for VHL care.
Whether you’re a healthcare professional, researcher, or advocate, this is your opportunity to be part of the conversations shaping the future of VHL.

What to expect:

The latest breakthroughs in VHL research and treatment
Insights from leading global experts
Collaborative discussions across disciplines
Opportunities to connect with peers advancing VHL care

At the most recent symposium, more than 200 experts gathered to exchange ideas and advance progress toward better outcomes for people living with VHL.
This year’s event builds on that momentum, creating space for innovation, collaboration, and meaningful progress. Secure your spot today by clicking the button below!

Register Now

Submit An Abstract

Visit the Symposium Website

Experience three days of comprehensive programming designed to advance VHL research, improve patient outcomes, and strengthen our global community.

Visit the Symposium Website by clicking here to learn more about the host committee, hotel details for the event, keynote speakers, and more.

Registration is open now!

Patient Advocates & Students: $25
Postdocs & Residents: $50
Scientists & Clinicians: $100
Corporate & Industry Rate: $1,000

November 18th Low/No Vision Call
2026-11-18 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month. *Please note that this call has been delayed one week due to Veterans Day!

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:

We will be discussing basic blindness skills.

If you are blind or visually impaired as a result of VHL, we welcome you to participate on the low and no vision call. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion!

This facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET.

If you would like to join the call list please click here to register.

December 7th Patient/Caregiver Call
2026-12-07 20:00 - 21:00 | 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 Monday of every month at 8 PM ET.

Call topic:
Traditions, Holidays, and Special Occasions with VHL
Sharing experiences and strategies for navigating family gatherings, travel, celebrations, and expectations during special times of the year.

If you would like to join the call list please click here to register.

December 9th Low/No Vision Call
2026-12-09 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month. *Please note that this call has been delayed one week due to Veterans Day!

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 questions do you get asked most about blindness, and what are your answers?

If you are blind or visually impaired as a result of VHL, we welcome you to participate on the low and no vision call. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion!

This facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET.

If you would like to join the call list please click here to register.

January 4th Patient/Caregiver Call
2027-01-04 20:00 - 21:00 | 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 Monday of every month at 8 PM ET.

Call topic:
Lessons Learned: Wisdom from the VHL Journey
A reflective discussion on personal growth, unexpected strengths, helpful perspectives, and advice participants would share with someone newly diagnosed or new to caregiving.

If you would like to join the call list please click here to register.

January 13th Low/No Vision Call
2027-01-13 19:30 - 20:30 | Zoom / Online
Second Wednesday of every month. *Please note that this call has been delayed one week due to Veterans Day!

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:

Shopping as a blind person.

If you are blind or visually impaired as a result of VHL, we welcome you to participate on the low and no vision call. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion!

This facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET.

If you would like to join the call list please click here to register.
