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 mission of the CERN Foundation is to develop new treatments for ependymoma, improve the outcomes and care of patients, ultimately leading to a cure. 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 EpendyKids is a directory of children who are fighting a rare pediatric brain tumor called ependymoma.
- Ependyparents Ependyparents is a list of parents of ependymoma patients, survivors and angels of brain tumors.
- Pediatric Brain Tumors is a list of parents and other family members of child patients, survivors and angels of brain tumors.
- Hawktober is an Awareness campaign designed to bring more attention to brain tumors, those diagnosed with them, and survivors.
- Alexa’s Gifts of Hope is a Foundation raises money for pediatric brain tumor research and to help and support children who are afflicted with this disease. Read about Alexa’s battle with ependymoma.
Ependymoma Inspirational Stories
- Read Carol Welsh’s story for a real look into life with ependymoma from the perspective of a survivor.
- Check out Bruce Blount’s story – adult ependymoma survivor’s website that looks at various aspects of treatment and moving on.
Read Paige’s story to get an inside glimpse of what it’s like to have a child diagnosed with the rare cancer ependymoma.
Check out Melissa’s well documented journey with ependymoma. Her courage is remarkable.
Intramedullary Ependymoma – my journey, a blog documenting her journey with ependymoma. A real look into surgery, rehabilitation and treatment with a little bit of humor.
View more inspirational stories collected by the CERN Foundation.
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.