Living with Ependymoma
A rare tumor of the glial cells of the brain and spinal cord.
Understanding Ependymoma
It can occur at any time in life. GARD has little additional detail about this condition in its record.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Migraine
- Pain
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Alex's Lemonade Stand Foundation and Collaborative Ependymoma Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Alex's Lemonade Stand Foundation, Collaborative Ependymoma Research Network
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Alex's Lemonade Stand Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: benign ependymoma; cellular ependymoma (histologic variant); classic ependymoma; clear cell ependymoma (histologic variant); ependymoma, familial; epithelial ependymoma
Patient organizations
- Alex's Lemonade Stand FoundationEpendymoma · United States
- Collaborative Ependymoma Research NetworkEpendymoma · United States
- American Cancer SocietyEpendymoma · United States
- Pediatric Brain Tumor FoundationEpendymoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Ependymoma.
Explore research for Ependymoma
Explore actively recruiting Ependymoma studies with HealthSpark.
Find actively recruiting studies for Ependymoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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