Chordoma Foundation

Chordoma support groups and meetups

Even though I’m one in a million, I’m not alone.

Alicia Jeffreys

chordoma survivor

Virtual support groups

A rare disease like chordoma can be lonely, so we provide ways for patients, survivors, and co-survivors to connect with one another. This includes professionally facilitated virtual support groups, where you can come together with other people affected by chordoma to support and learn from one another, make new connections, and exchange information.

The groups are formally run by talented facilitators who have experience providing support and resources to those affected by cancer. Once a month, the groups meet for an hour on Zoom. To maximize discussion and connection, registration for each group is limited to 25 people on a first-come, first-served basis every month.

We offer two distinct virtual groups:

Patients and survivors support group

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. 

When this group meets: Second Tuesday of each month at 6:00 PM ET

Who should attend: Anyone who has been diagnosed with chordoma, is currently in treatment, or has been treated in the past is welcome.

Register for the next Patients and Survivors Group »

Caregivers and co-survivors support group

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.

When this group meets: Third Wednesday of each month at 6:30 PM ET

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.

Register for the next Caregivers and Co-survivors Group »

We are excited to provide these support groups as opportunities for you to connect with each other for support, encouragement, and hope.

Chordoma meetup groups

In addition to the Foundation’s virtual support groups, two regional meetup groups are available to chordoma patients, survivors, and co-survivors. If you’re near the areas listed below, you may also be interested in joining a meetup:

  • Midwest meetup (Chicago and surrounding areas), organized by Noreen Potempa, spouse of chordoma patient. Reach out to Noreen for details.
  • New York metro meetup, organized by chordoma survivor Sharon Berlan, who also co-runs the Chordoma Support and Survivors Facebook group. Email Sharon for information.

These meetups are led by volunteers, who expect that the groups will begin virtually but may include in-person components. The format of these groups is still taking shape, but attendees can expect a welcoming, interactive social space for people linked by chordoma and geographic proximity. The organizers welcome new members’ input about how to make the meetups as helpful as possible.

We’ll keep this list up to date when additional meetups are organized in other areas.

 

As options for support and connection continue to expand, we hope everyone affected by chordoma can know they are not alone.

In addition to our virtual support groups, we offer numerous additional opportunities to connect to others and their stories. We encourage you to join our online community, talk with or become a Peer Guide, and read or submit an Uncommon Story.

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