April Patient/Caregiver Call
2025-04-07 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:
How to navigate the vulnerability of VHL.

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

April Low/No Vision Call
2025-04-09 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 stories do you tell yourself about your illness, your disability, yourself? How do those stories serve or hinder you, and can those stories be changed?”

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.

VHL Connect | MD Anderson
2025-05-03 09:00 - 14:00 (America/New_York) | MD Anderson, 1515 Holcombe Blvd., Houston, TX, 77030, United States

May Patient/Caregiver Call
2025-05-05 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:
Create healthy boundaries so you can increase your health

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

May Low/No Vision Call
2025-05-14 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:

“Decision Fatigue”

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.

VHL Connect | Penn Medicine
2025-05-16 10:00 - 14:00 (America/New_York) | Penn Medicine, 3400 Civic Center Blvd, Philadelphia, PA, 19104, United States

May Parents of VHL Patients Call
2025-05-19 20:00 - 21:00 (America/New_York) | Zoom / Online
Third Monday of every other month.
Please join us on the third Monday every other month to discuss how we can help our children thrive with VHL.

Our topic
“How to navigate the challenging emotions that come with having a child with a chronic illness (and how to know when we aren’t doing that well).”

All parents of VHL patients 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 third Monday of every other month at 8 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.

VHL Connect | Huntsman Cancer Institute
2025-05-31 10:00 - 14:00 (America/Denver) | Huntsman Cancer Institute, 1950 Circle of Hope, Salt Lake City, UT, 84112, United States

June Patient/Caregiver Call
2025-06-02 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:
Learn how to ask for help with less guilt from health care providers and loved ones

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

Charla Informativa con Dr. Alejandro Sanchez sobre Von Hippel-Lindau, con Preguntas y Respuestas | VHL Informational Session and Q&A with Dr. Alejandro Sanchez [IN SPANISH]
2025-06-09 19:00 (America/New_York)
English description to follow!

¡Hola, miembros de la comunidad de VHLA!

Nos complace anunciar que la Alianza VHL y el Dr. Alejandro Sánchez, del Instituto Oncológico Huntsman, ofrecerán un seminario web el 9 de junio de 2025 a las 19:00 h (hora del este). El Dr. Sánchez abordará todos los temas relacionados con la VHL, desde los fundamentos hasta el tratamiento, y desde la vigilancia hasta la investigación. El seminario web se realizará en español, con subtítulos en inglés disponibles en Zoom.

También habrá tiempo para algunas preguntas, que se pueden dirigir a paula.hernandez@vhl.org con el asunto: Preguntas y respuestas, Dr. Sánchez.

NOTAR: el Dr. Sánchez no ofrecerá asesoramiento médico durante esta sesión.

REGISTRO

Hello VHLA Community Members!

We are so excited to share the VHL Alliance and Dr. Alejandro Sanchez, MD, of the Huntsman Cancer Institute, will host a webinar on June 9, 2025, at 7:00 pm EST. Dr. Sanchez will discuss all things VHL, from basics to treatment, and surveillance to research. The webinar will be conducted in Spanish, with English subtitles available on Zoom.

There will also be time for a few questions, and you may direct those to paula.hernandez@vhl.org with the subject line: Q&A Dr Sanchez.

NOTE: Dr. Sanchez will not be giving medical advice during this session.

Register here

This webinar is brought to you with support from:

June Low/No Vision Call
2025-06-11 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 are your worries related to VHL/vision loss and how do you handle 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, please fill out the form below.

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

VHL Connect | Mass General
2025-06-14 09:00 - 13:00 (America/New_York) | Mass General, 185 Cambridge St, Boston, MA, 02114, United States

July Patient/Caregiver Call
2025-07-07 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:
Introducing our new call moderator, Devon Ciampa, DSW, LCSW-C!

Devon Ciampa, DSW, LCSW-C, has dedicated her career to supporting adolescents and young adults navigating crises, both in the U.S. and internationally. After working in educational development throughout Asia, she returned to the United States to work on program development for youth aging out of the child welfare system as well as for unaccompanied refugee minors in foster care. Shifting to social work, Dr. Ciampa gained experience in medical settings at Children’s National Medical Center in Washington D.C. followed by Johns Hopkins Hospital in Baltimore, MD, where she served as the clinical social worker and adolescent and young adult (AYA) navigator for oncology patients between the ages of 15 and 28. Currently, she is the first AYA Navigator and Program Coordinator at the National Institutes of Health Clinical Center tasked with building a comprehensive program across NIH institutes for patients ages 15 to 40. Dr. Ciampa regularly presents on AYA psychosocial needs and has a therapy practice dedicated to young adults. Dr. Ciampa holds two advanced degrees from Columbia University and recently received her doctorate from the University of Pennsylvania with a focus on advanced care planning for emerging adults.

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

July Low/No Vision Call
2025-07-09 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:

“Feelings of inclusion. Are there things that you do to make sure that you feel included? In what situations do you feel that you aren’t being included? We will also talk about tips, tricks, and products that make our lives easier, particularly in regard to cooking and food preparation.”

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.

Family Weekend 2025 | Ann Arbor, Michigan
2025-08-01 - 2025-08-03
Can you join us for VHL Family Weekend 2025?

When: August 1-3, 2025
Where: University of Michigan, Ann Arbor, MI

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. This year, we’re thrilled to partner with the University of Michigan to host the event in beautiful Ann Arbor.

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 with lived experience 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.

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.

Tickets are available for only $50 – Click here to secure your spot!

Please note that we require a registration for every person who plans to attend Family Weekend
Your ticket price includes a welcome dinner on Friday night and additional activities throughout the weekend!

FRIDAY
Check in at The Graduate, 615 E. Huron St, Ann Arbor, MI 48104 (855-605-0316)
When checking in, please look for us in the hotel lobby. We’ll have a general schedule for you, as well as your name badge for the weekend.

“The Big House” Tour
Transportation to the UM Stadium will leave promptly from the hotel lobby at 4:30 PM. The tour is approximately 1-1.5 hours long. Transportation to the stadium, and onto the Welcome Tailgate will be provided. If you are staying at a different location, are a local, or prefer to use your own transportation, please meet at the Jack Roth Stadium Club Entrance on the east side of the Stadium just north of Crisler Center. Please Note: The tour is at capacity so only those who confirmed their attendance will be admitted on the tour.

6:30 PM Welcome Dinner Tailgate: BURNS PARK 1300 Baldwin Ave, Ann Arbor, MI 48104 (enter at the corner of Wells and Baldwin)
Tailgating fun begins at 6:30 PM. Traditional BBQ fixings, and other snacks, will kick off an evening of fun and community. If you attend the tour, transportation to Burns Park will be provided.
**If you are not attending the tour, but are attending the Welcome Tailgate, pick-up will be at 6:10 outside The Graduate lobby. Transportation will be provided to The Graduate at the conclusion of the event.**

SATURDAY
8:30 AM University of Michigan: Palmer Commons 100 Washtenaw Ave, Ann Arbor, MI 48109, Great Lakes Room 4th Fl

Transportation will not be provided from The Graduate to the UM, as it is within walking distance. However, those who have noted mobility exceptions will be driven to Palmer Commons by staff, and we will depart promptly at 8:15 AM.

Parking is available in the Palmer Drive Parking Structure. Parking vouchers will be provided.
A light breakfast will be provided from 8:30, with presentations beginning at 9 AM. Youth will depart for their day of fun at approximately 9:45. (Please see below for detailed information on their schedule). Please be aware that there will be photography, video, and seminar recording throughout the day. Presentations will conclude at 3:30 PM

Kids programming, Chaperoned by UM Genetic Counseling Program Volunteers; departing Palmer Commons at 9:45 AM
Kids 10 and under:
10:00 Hands-On Museum of Ann Arbor
12:15 Lunch
12:45 University of Michigan Museum of Natural History
1 PM Planetarium-The Sky Tonight
2 PM (Optional) T-Rex
3:30 Return to Palmer Commons

Teens:
10:00 Launch Family Entertainment
12:15 Lunch
1:00 University of Michigan Museum of Natural History
1 PM Planetarium-The Sky Tonight
2 PM (Optional) T-Rex
3:30 Return to Palmer Commons

SUNDAY
9 AM The Graduate, 615 E Huron, Ann Arbor, MI 48109

The day will begin with an optional 7:30 Yoga class on the terrace, followed by the Community Breakfast at 9 AM. We have a great lineup of speakers and sessions for the final morning of the event. We will conclude at Noon, with a boxed lunch for your travels!

Lodging:
We recommend staying at The Graduate hotel in Ann Arbor.

*Please note that we cannot guarantee that we can accommodate dietary requests received after July 7th*

Mark your calendars, and stay tuned for more details, including the agenda and guest speakers. We can’t wait to see you there!

Want to attend VHL Family Weekend 2025 in Ann Arbor, Michigan, but worried about travel costs? We’re here to help!
The VHL Alliance is offering travel scholarships of up to $500 to help make this special weekend accessible to as many families as possible. Apply by June 12 to be considered. Click here to apply now!

Please direct any questions about this event to info@vhl.org

This event is brought to you with support from

August Patient/Caregiver Call
2025-08-04 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:
Building a healthy support network – Managing isolation and building connections

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

August Low/No Vision Call
2025-08-13 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:

Techniques, hacks, and shortcuts we’ve come up with to make every day tasks easier.

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.

September Patient/Caregiver Call
2025-09-08 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:
Emotional well-being – Dealing with stress, anxiety and uncertainty

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

September Low/No Vision Call
2025-09-10 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:

How do you express your feelings?

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.

October Patient/Caregiver Call
2025-10-06 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:
Self-advocacy and resilience – Becoming a powerful advocate for you and your loved ones through empowerment and emotional resilience

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

October Low/No Vision Call
2025-10-08 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 is support and who are our supporters?

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.

November Patient/Caregiver Call
2025-11-03 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:
Family and relationship dynamics – Navigating marriage, parenting, and friendships with a rare disease in the mix

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

November Low/No Vision Call
2025-11-12 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:

Confidence: when do we feel it, and when do we feel the lack of it?

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.

Webinar Series: The Importance of Coordinated Care in Addressing VHL
2025-11-17 16:00 - 17:00 (America/New_York) | Zoom / Online
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 Care in Addressing VHL, to explore how a team-based approach leads to better outcomes and quality of life for people living with VHL. Our expert presenters from UT Southwestern will discuss how coordinated care is implemented in clinical practice, what patients and families can do to ensure their care team is aligned, and how to make use of trusted resources such as the VHL Alliance Clinical Care Network and VHL Surveillance Guidelines.

This 45-minute presentation will be followed by a 15-minute Q&A session, giving attendees the opportunity to ask questions directly of our speakers, and is free to attend.

Speakers:
Kevin Courtney, MD, PhD
Professor, Department of Internal Medicine, Division of Hematology/Oncology
Director, Genitourinary Medical Oncology
Co-Leader, Genitourinary Oncology Disease-Oriented Team
UT Southwestern Harold C. Simmons Comprehensive Cancer Center

Qian (Janie) Qin, MD
Assistant Professor, Eugene P. Frenkel, M.D. Scholar in Clinical Medicine
Department of Internal Medicine, Division of Hematology/Oncology
UT Southwestern Harold C. Simmons Comprehensive Cancer Center

Register here: https://us02web.zoom.us/meeting/register/Hy2W3DDZR0iTF1icv1Ngyg

This event is brought to you with support from:

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.
