The CERN Foundation is engaged in a range of activities to support patients, caregivers, advocates and medical professionals.
The CERN Foundation is a non-profit organization dedicated to improving the lives of children and adults worldwide diagnosed with ependymoma. We strive to bring awareness to the rare disease and improve the outcome and care of patients through education, referral support, and supported research efforts.
CERN routinely connects patients and families with institutions and physicians that specialize in treating ependymoma. We are also happy to make connections between treating physicians and CERN representatives. For more information, click here.
Now in its 2nd Edition, the Ependymoma Guide provides the basic facts surrounding ependymoma, its diagnosis and treatment. The Ependymoma Guide is distributed at no charge to patients, caregivers and advocates in print and online. To find out how to obtain a copy, click here.
CERN Postdoctoral Basic Science Research Fellowship
This fellowship provides support for two years of funding to promising postdoctoral researchers whose focus is on ependymoma research. To read about our current fellow, click here.
The CERN Foundation supports the development of dedicated ependymoma content during the two largest international neuro-oncology conferences: the annual meeting of the Society for Neuro-Oncology and the Biennial International Symposium on Pediatric Neuro-Oncology.
CERN offers information about ongoing clinical trials and we provide education and direction to the ependmoma community. Our hope in with these trials is to collect critical data that will advance the treatment of ependymoma.
Ependymoma Outcomes Surveys
Quality of life is a critically important issue for children and adults diagnosed with an ependymoma. The Ependymoma Outcomes surveys allow us to continue to improve our understanding of the experience and current health status of those living with ependymoma. To participate in this online survey, click here.
Risk Assessment Project
CERN is expanding the work of our successful Ependymoma Outcomes Surveys to include the evaluation of potential risk factors for the occurrence of ependymoma as well as the evaluation of potential genomic changes that may lead to the development and progression of ependymoma. To participate in the risk study, click here.
Ependymoma Awareness Day
Recognized and celebrated around the world, the annual Ependymoma Awareness Day has become the flagship event in the ependymoma community. The event culminates in a mass butterfly release that is videotaped and streamed to viewers around the globe. The CERN awareness and outreach team also partners with other groups to support awareness efforts in their local area. To learn more about past Awareness Day events and how to get involved in the future, click here.
Support the work of CERN
With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma.