Support
A rare disease like chordoma can be lonely, so we provide ways for patients, survivors, and co-survivors to connect with one another.
Our professionally facilitated virtual support groups are a place where you can come together with others affected by chordoma to support and learn from one another, make new connections, and exchange information. The group facilitators have extensive experience providing support and resources to those affected by cancer. Once a month, the groups meet for an hour on Zoom.
Patients and survivors
About the facilitator: Jennifer Bires has over a decade of experience running groups for people impacted by cancer. Jennifer is the Executive Director of Life with Cancer and Patient Experience for the Inova Schar Cancer Institute. She works to ensure that patients, survivors, and their family members have access to psychosocial care at no cost to them to help individuals cope with cancer, its treatments, and survivorship in the best possible way. She specializes in working with young adults who have been diagnosed with cancer, communication around end of life concerns, and sexual health. Jennifer earned her master’s degree from Washington University in Saint Louis and her bachelor’s degree from Clemson University.
Who should attend: Anyone who has been diagnosed with chordoma, is currently in treatment, or has been treated in the past is welcome.
When this group meets: Second Tuesday of each month at 6:00 PM Eastern (U.S. and Canada).
Caregivers and co-survivors
About the facilitator: Megan Whetstone has several years of experience working with oncology patients and chordoma patients specifically providing psychosocial support, counseling, and connection to resources. She is also well-versed in facilitating support programs for patients and caregivers alike. Megan completed her education at The Ohio State University and has over five years of experience in the field.
Who should attend: Anyone whose loved one has been diagnosed with chordoma, is currently in treatment, or has had treatment in the past. Parents, spouses, siblings, and other family members are all welcome.
When this group meets: Third Wednesday of each month at 7:00 PM Eastern (U.S. and Canada) Time. Please note: This group will not meet in September.
In addition to the two support groups we host for survivors and co-survivors, in we also offer population-specific groups. These groups will be led by members of the chordoma community and are meant to provide a space where chordoma survivors and co-survivors with similar journeys can connect with each other around their unique needs.
Adolescents and young adults
About the facilitator: Kaitlin Slepian was diagnosed with poorly differentiated cervical chordoma in 2016 when she was 17 years old. Her cancer diagnosis transformed her life and was a catalyst for her passion to work with children and families experiencing the challenges of illness and hospitalization. She has significant experience working with children and families in stressful situations as well as a background in child development and family dynamics. She is excited to lead the AYA support group to help create a sense of community among younger patients and survivors. Kaitlin received a BS in Family Studies and Human Development from the University of Arizona as well as an MS in Child Life and Family-Centered Care at Boston University.
Who should attend: Anyone ages 16 to 30 years old who has been diagnosed with chordoma
When this group meets: The first Sunday of the month at 6 PM Eastern (U.S. and Canada).
In addition to the Foundation's virtual support and community-led groups, regional US-based meetup groups may be available to chordoma patients, survivors, and co-survivors.
Midwest (US)
If you live in the Midwest (Chicago and surrounding areas) and would like to connect with other chordoma patients and their families please email Noreen Potempa for more information about the next Midwest meetup group.
NOTE: Currently this group meets virtually.
Zoom-Café Germany
About the facilitators: Irene Badura is the Chordoma Foundation’s Ambassador for Germany. Her grandson was diagnosed with chordoma in 2019. She works as a neuropsychologist in an early rehabilitation facility in southern Germany. Carolina Herzfeld was diagnosed with chordoma in 2015. She firmly believes that, in addition to professional medical care, healing requires patients and caregivers to connect and exchange experiences.
Who should attend: The group is for anyone with chordoma and/or their loved ones. Please note that the language of communication in this group is German.
When this group meets: The third Tuesday of every other month.
Online Support Café - The Netherlands
About the facilitator: Wally was diagnosed with clival chordoma in 2020. Working in healthcare for over 30 years helped her navigate her disease journey. She is the Ambassador for the Netherlands and focuses on supporting patients and their loved ones.
Who should attend: The group is for anyone with chordoma and/or their loved ones. Please note that the language of communication in this group is Dutch.
When this group meets: Every third Wednesday evening (19:30) and third Friday morning (10:30) of every other month. Our 2024 meetings are scheduled for: January 17 and 19, March 15 and 20, May 15 and 17, July 17 and 19, September 18 and 20, and November 20 and 22.
WhatsApp group Israel
About the facilitator: Uri Melzer was diagnosed with sacral chordoma in March 2021, at the age of 63. He was recommended an en-bloc resection in Israel, which was not a favorable option due to the quality of life issues that could arise after the surgery. Carbon-ion radiation therapy was mentioned as an alternative to surgery. After researching this option and talking to others who underwent this treatment, Uri decided to have carbon-ion radiation therapy at MedAustron in Austria. He successfully completed 16 sessions in May 2021, and since then has remained stable.
Who can join: Anyone with chordoma and/or their loved ones in Israel.
When this group meets: Members of this group connect with each other through WhatsApp. Please email Kimberley de Haseth for the link to join the group.
Chordoma UK Chat & Cheers Group
About the facilitator: Sylvie Leslie is a chordoma patient as well as Trustee and Director of Chordoma UK. Chordoma UK supports chordoma patients and their loved ones and invests in research, focusing on the role of brachyury in chordoma.
Who should attend: The group is for anyone with chordoma and/or their loved ones.
When this group meets: Virtually on the last Thursday of every month at 7.30pm BST. For more details about the next meeting and how to get registered, visit the Events page or email Sylvie Leslie.
NOTE: This group is not organized by the Chordoma Foundation.
Please note: All groups listed on this page are offered to the chordoma community free of charge as a source of emotional support and do not constitute mental health treatment. If you are in need of mental health treatment, please contact your healthcare team for a referral to a mental healthcare practitioner.
Our private online community, Chordoma Connections, is a place for all those affected by chordoma to connect with and support each other. No matter where you are in your journey with chordoma, your role in that journey, or your location in the world, there is a place for you in Chordoma Connections. Join the community today!
Peer Connect is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Peer Guides are available to support patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.
Ambassadors help chordoma patients and families outside of the United States connect with country-specific and local resources.
Patient Navigators can help answer your questions, provide information about treatment guidelines, help you find qualified doctors, and connect you with others in the chordoma community who have been through a similar journey.