VHL Alliance

November Patient/Caregiver Call
2024-11-04 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:
Learn to understand what truly matters to you and create a plan to create an incredibly rich life-despite all that VHL entails.

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

December Patient/Caregiver Call
2024-12-09 20:00 - 21:00
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. *Please note that this call is delayed one week due to a scheduling conflict*

Call topic:
Creating healthy relationships with good communication skills

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

January Patient/Caregiver Call
2025-01-06 20:00 - 21:00
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 incessant thoughts that weigh us down.

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

February Patient/Caregiver Call
2025-02-03 20:00 - 21:00
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 three ways to be more resilient.

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

March Patient/Caregiver Call
2025-03-03 20:00 - 21:00
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 mindfulness techniques that reduce persistent pain (physically or mentally) and create a sense of peace and control.

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

April Patient/Caregiver Call
2025-04-07 20:00 - 21:00
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.

May Patient/Caregiver Call
2025-05-05 20:00 - 21:00
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.

June Patient/Caregiver Call
2025-06-02 20:00 - 21:00
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.

July Patient/Caregiver Call
2025-07-07 20:00 - 21:00
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.

August Patient/Caregiver Call
2025-08-04 20:00 - 21:00
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.

September Patient/Caregiver Call
2025-09-08 20:00 - 21:00
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.

October Patient/Caregiver Call
2025-10-06 20:00 - 21:00
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.

November Patient/Caregiver Call
2025-11-03 20:00 - 21:00
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.

December Patient/Caregiver Call
2025-12-01 20:00 - 21:00
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.

January Patient/Caregiver Call
2026-01-05 20:00 - 21:00
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.

February 2nd Patient/Caregiver Call
2026-02-02 20:00 - 21:00
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.

March 2nd Patient/Caregiver Call
2026-03-02 20:00 - 21:00
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.

April 6th Patient/Caregiver Call
2026-04-06 20:00 - 21:00
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.

May 4th Patient/Caregiver Call
2026-05-04 20:00 - 21:00
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.

June 1st Patient/Caregiver Call
2026-06-01 20:00 - 21:00
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.

July 6th Patient/Caregiver Call
2026-07-06 20:00 - 21:00
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.

August 3rd Patient/Caregiver Call
2026-08-03 20:00 - 21:00
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:
Traveling and Exploring with Confidence
Sharing strategies for planning trips, managing medical needs on the go, and adapting to unexpected challenges while continuing to explore and enjoy life.

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

September 14th Patient/Caregiver Call
2026-09-14 20:00 - 21:00
First Monday of every month. *Please note that this call has been pushed back one week due to the holiday!

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:
Finding Meaning and Purpose Through Change
Exploring how goals, priorities, and personal identity evolve over time, and how we can continue pursuing a full life when life doesn’t go according to plan.

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

October 5th Patient/Caregiver Call
2026-10-05 20:00 - 21:00
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.

November 2nd Patient/Caregiver Call
2026-11-02 20:00 - 21:00
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.

December 7th Patient/Caregiver Call
2026-12-07 20:00 - 21:00
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.

January 4th Patient/Caregiver Call
2027-01-04 20:00 - 21:00
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.
