Ependymoma Resources

Organizations Specific To Ependymoma

Adult Ependymoma Online Support Group

The Adult Ependymoma Online Support Group is comprised of survivors, caregivers, family members, friends or anyone else with an interest in ependymoma.

Collaborative Ependymoma Research Network (CERN) Foundation

The CERN Foundation is committed to improving the care and outcome of people with ependymoma through community support and research efforts. The CERN website is dedicated to informing patients and caregivers about treatment, diagnosis, clinical trials, symptom management and recurrence. It is a valuable resource for those affected by ependymoma, including patient stories. You can also follow us on Twitter and Facebook.


EpendyKids is a directory of children who are fighting a rare pediatric brain tumor called ependymoma.


Ependyparents is a list of parents of ependymoma patients, survivors and angels of brain tumors.

NCI-CONNECT (Comprehensive Oncology Network Evaluating Rare CNS Tumors)

NCI-CONNECT aims to advance the understanding of rare adult central nervous system cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.

Ependymoma Inspiration Stories

  • Carol - a real look into life with ependymoma from the perspective of a survivor.
  • Bruce - an adult ependymoma survivor’s website that looks at various aspects of treatment and moving on.
  • Melissa - a well documented journey with ependymoma. Her courage is remarkable.
  • Sarah - a blog documenting her journey with intramedullary ependymoma. A real look into surgery, rehabilitation and treatment.

View more inspiration stories

Please note that the content on the page above is provided solely as an informational resource for patients with ependymoma, their family members and caregivers. These organizations are not associated with the CERN Foundation and we are not responsible for the content on these sites. The CERN Foundation is always interested in hearing about additional resources and groups seeking to improve the care and treatment of patients with ependymoma. If you would like to suggest a resource to be added to this page, please contact us.

Stay Informed with the CERN Newsletter

The CERN Foundation is committed to informing you with the latest ependymoma news and research. Join our mailing list for monthly updates.