VHL Alliance

December Patient/Caregiver Call
2025-12-01 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:
Navigating the (very complicated) healthcare system – Demystifying the healthcare landscape

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

VHL Connect: Atlanta
2025-12-06 08:00 - 14:00 (America/New_York) | Hilton Millennium Center, 2301 Sullivan Rd, College Park, GA, 30337, United States
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 field.

Managing VHL can be complex – but you don’t have to do it alone. This event offers the chance to hear directly from clinicians and researchers who specialize in VHL care, learn from others who are living with the condition, and connect with the community that understands your journey.

Hosted in partnership with the Georgia Cancer Center at Augusta University, a VHL Alliance Clinical Care Center, the day will include educational sessions, open Q&A discussions, and opportunities to share experiences in a supportive setting. Lunch and refreshments are included.

What to expect:

Updates and insights from VHL experts
Conversations with patients and caregivers
Guidance on managing the emotional and practical sides of VHL
Time to connect with others in the community over lunch

Whether you’re newly diagnosed or have been managing VHL for years, VHL Connect: Atlanta is a chance to learn, ask questions, and connect with our community.

Space is limited. Register today to join us for this day of connection and learning: https://vhl.app.neoncrm.com/np/clients/vhl/eventRegistration.jsp?event=81&

This event is brought to you with support from:

December Low/No Vision Call
2025-12-10 19:30 - 20:30 (America/New_York) | 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:

Friendships

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 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, please fill out the form below.

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

January Patient/Caregiver Call
2026-01-05 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:
Living fully with VHL – celebrating small wins, changing directions, adapting goals

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

January Low/No Vision Call
2026-01-14 19:30 - 20:30 (America/New_York) | 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:

Bucket lists, goals, achievements, accomplishments, etc.

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 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, please fill out the form below.

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

February 2nd Patient/Caregiver Call
2026-02-02 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:
Coping with Uncertainty and the Future
Focusing on managing the unpredictability of VHL, planning for medical and life uncertainties, and strategies to stay grounded while facing long-term challenges.

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

Feb 11th Low/No Vision Call
2026-02-11 19:30 - 20:30 (America/New_York) | 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:

What blindness or VHL related items would it be critical for you to pack in a hospital or emergency go bag?

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 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.

March 2nd Patient/Caregiver Call
2026-03-02 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:
Pain Management and Symptom Support
Practical tools for coping with physical symptoms, fatigue, or pain, and ways you and your caregivers can support day-to-day comfort and quality of life.

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

March 11th Low/No Vision Call
2026-03-11 19:30 - 20:30 (America/New_York) | 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:

Household management: How do you do Home upkeep and maintenance? If you do it yourself, how? If you use outside resources, what are they, and how did you find them? For example, some of the chores might be small repairs, shoveling snow, yard maintenance, etc.

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 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.

VHL Connect | Seattle
2026-03-21 09:00 - 12:00 (America/Los_Angeles)
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 the building which can make locating the office part of the building a little confusing. The elevator bank for the offices is in the middle of the building lobby, across from the waterfall sculpture.
Schedule: 9:00 AM – Noon PST.

Join us for a day of presentations on current VHL Research and treatment options, along with the opportunity to meet with leading VHL Clinicians. Registration will open at 8:30 am! Lunch is included!

Click here to register now: https://vhl.app.neoncrm.com/np/clients/vhl/event.jsp?event=86&

April 6th Patient/Caregiver Call
2026-04-06 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:
Building Sustainable Routines
Tips and strategies for structuring routines that conserve energy, reduce stress, and making room for meaningful activities without overexertion.

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

April 8th Low/No Vision Call
2026-04-08 19:30 - 20:30 (America/New_York) | 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 do you strike the balance between asking for what you need and proving that you are capable?

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 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.

Avances en la enfermedad de VHL y la investigación del cáncer renal: De la biología a nuevas terapias
2026-04-13 18:00 - 19:00 (America/New_York) | Zoom / Online
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 nuevas perspectivas sobre la biología del cáncer renal, el papel de la vía HIF y las terapias emergentes que están dando forma al futuro del tratamiento. Este seminario está diseñado para pacientes, familias, cuidadores y cualquier persona interesada en comprender mejor la ciencia detrás de VHL y cómo los descubrimientos actuales pueden traducirse en mejores resultados para los pacientes.

Habrá tiempo para preguntas y respuestas en vivo, brindando a los asistentes la oportunidad de interactuar directamente con Dr. Brugarolas.

No pierda esta oportunidad de aprender de un líder en el campo y mantenerse al día con los avances más recientes en la investigación de VHL.

Regístrese aquí: https://us02web.zoom.us/meeting/register/9MXtreSwSt2BrjOvAAvzNA

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Advances in VHL Disease and Kidney Cancer Research: From Biology to New Therapies

Join the VHL Alliance for an engaging and informative webinar on April 13 at 6:00 PM ET, presented by renowned physician-scientist James Brugarolas, M.D., Ph.D.

In this session, Dr. Brugarolas will share the latest advances in Von Hippel-Lindau (VHL) disease research, including new insights into kidney cancer biology, the role of the HIF pathway, and emerging therapies that are shaping the future of treatment. This webinar is designed for patients, families, caregivers, and anyone interested in better understanding the science behind VHL and how current discoveries are translating into improved patient outcomes. Please note that this webinar will be conducted in Spanish, but Zoom can provide live subtitles in English to attendees.

There will be time for a live Q&A, giving attendees the opportunity to engage directly with Dr. Brugarolas.

Don’t miss this opportunity to learn from a leader in the field and stay up to date on the latest in VHL research.

Register here: https://us02web.zoom.us/meeting/register/9MXtreSwSt2BrjOvAAvzNA

This webinar is brought to you with support from:

May 4th Patient/Caregiver Call
2026-05-04 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:
Sustaining Yourself While Caring for Others
Practical strategies for managing stress, avoiding burnout, and keeping your own life and goals in focus.

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

Parents of VHLers: Navigating Care, Emotions, and Growing Independence
2026-05-06 18:00 - 19:00 (America/New_York) | Zoom / Online
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 these realities every day.

Join us for an honest, supportive conversation focused on practical strategies and shared experiences. Together, we’ll explore how to manage the ongoing demands of care while also making space for your family’s life beyond VHL.

During this session, we’ll touch on:

Navigating the Medical Maze: Tips for managing the constant cycle of MRIs, screenings, and specialist visits without becoming overwhelmed
Battling “Scanxiety” & Burnout: Real-world strategies to cope with emotional strain, genetic guilt, and the anxiety surrounding scan results
Having the Hard Conversations: Guidance on talking with children, teens, and others about a VHL diagnosis in a way that informs without increasing fear
From Advocacy to Independence: Supporting your child in school and healthcare settings, and preparing for the transition to young adulthood

This webinar will be moderated by:

Kimberly Parsley is a writer, life skills coach, and disability advocate who became blind at age 14 due to VHL. She currently serves as an Independent Living Specialist with the Center for Accessible Living and hosts “Demand and Disrupt: a Disability Podcast.” She lives in Bowling Green, Kentucky with her husband and two children.

Miranda Di Biase, MS, CGC is a pediatric genetic counselor at The Children’s Hospital at Montefiore and a new VHL Clinical Partner. She is dedicated to supporting families through diagnosis, care planning, and long-term management.

Whether you are newly navigating a VHL diagnosis or have been on this journey for years, this session offers a space to learn, connect, and feel supported alongside others who understand.

This event is brought to you with support from:

May 13th Low/No Vision Call
2026-05-13 19:30 - 20:30 (America/New_York) | 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:

Who were the most supportive people when you were losing your sight or going through other traumatic things with VHL? What did they do or not do that gave you strength, confidence, self worth, etc?

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 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.

June 1st Patient/Caregiver Call
2026-06-01 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:
Communication and Advocacy in Healthcare Settings
Deepening skills in communicating effectively with doctors, navigating appointments, and making shared decisions, especially for patients and caregivers working as a team.

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

June 10th Low/No Vision Call
2026-06-10 19:30 - 20:30 (America/New_York) | 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:

Is it important for the broader VHL community to understand the needs, differences, and similarities of low and no vision VHL patience? If so, how might we go about sharing our own stories and struggles with them?

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 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.

July 6th Patient/Caregiver Call
2026-07-06 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:
Financial and Practical Planning
Addressing work, insurance, medical bills, disability resources, and other practical challenges.

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

July 8th Low/No Vision Call
2026-07-08 19:30 - 20:30 (America/New_York) | 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:

What mental health practices have you found both successful and accessible? What practices do you wish were accessible but aren’t?

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 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.

Family Weekend 2026
2026-08-07 17:00 - 2026-08-09 14:30 (America/New_York) | Kimpton Everly Hotel, 1800 Argyle Ave, Los Angeles, 90028, United States
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 to secure a discounted room at the Everly Hotel.

Registration Link: Click here to secure your spot today!

What to Expect:

Educational Sessions: Learn the latest in VHL research, treatments, and patient care from top medical professionals.
Community Building: Meet and bond with families, patients, caregivers, and supporters of the VHL community.
Interactive Workshops: Participate in hands-on activities and discussions tailored to help navigate the challenges of living with VHL.
Kid-Friendly Activities: Fun, supervised programs for children, making this event enjoyable for all ages.
A dedicated Young Adult track for VHLers between the ages of 21 and 35

Who Should Attend:

Individuals and families living with VHL
Medical professionals and researchers
Caregivers, advocates, and supporters

Whether this is your first Family Weekend or you join us every year, Family Weekend always promises to inspire, inform, and connect. Come be part of a supportive community that understands the unique challenges of living with VHL.

Travel scholarships are available for this event, too. Be sure to mark your scholarship interest on the registration form and our team will be in touch!

Early bird tickets are available for only $25 if you register before June 1st, 2026!
*Please note that every attendee must register for a ticket to secure their spot*

Register Now!

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
