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Largest Report to Date of the Impact of Ependymoma in Adults

Coping with the Holidays

The holiday season is often time of tradition and renewed hope. If you or a loved one has an ependymoma, or if you have lost someone to the disease, the holidays may be more stressful. This can make it hard to feel connected, unable to meet demands, and out of sync with those around you.

The CERN Foundation Outreach Team offers these suggestions to help you cope during the holiday season.

Clinical Presentation and Outcomes for Adult Ependymoma Patients

The Adult Ependymoma Outcomes project was initiated to capture pertinent patient information on various aspects of one’s care through self-reported experience to evaluate how this rare tumor impacts patients. This was a catalyst in exploring disease and treatment related factors associated with outcomes in patients with disease in the brain versus spinal cord and this report provides a comprehensive update of the clinical presentation and outcomes of this large population of ependymoma patients.

This is the largest report to date of the impact of ependymoma in adults. We found there are significant symptoms and functional impairment that are observed throughout the disease trajectory. Also, the use of an online survey collecting the information we collected, is feasible and this supports focusing on specific areas that can potentially improve aspects of patient care while also helping to identify ways in educating patients and providers.

READ THE ARTICLE

Support our year-end goal!

Approximately 1,340 people will be diagnosed with an ependymoma this year. With your generous support, we will continue to expand our efforts to improve the care and outcome of people with ependymoma.

We created this campaign for everyone to contribute at various impact levels. You can create your own fundraising campaign or event, donate and encourage others to donate by sharing your page with your family and friends.

Your involvement is critical to our success. Thank you again for your help!

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CERN Foundation PO Box 217 | Zionsville, IN 46077 US

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