Living with Ependymoblastoma
A rare brain cancer that usually affects infants and very young children.
Understanding Ependymoblastoma
It belongs to a group called central nervous system embryonal cancers. Symptoms depend on where in the brain it grows. They can include loss of balance, speech changes, weakness, and double vision.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Loss of balance
- Abnormal speech
- General weakness or weakness on one side of the face
- Double vision
- Headaches
- Signs of pressure inside the head
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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: embryonal tumor with abundant neuropil and true rosettes; embryonal tumor with multilayered rosettes with c19mc amplification; embryonal tumor with multilayered rosettes, c19mc-altered; embryonal tumour with abundant neuropil and true rosettes; embryonal tumour with multilayered rosettes; embryonal tumour with multilayered rosettes with c19mc amplification
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ependymoblastoma.
Explore research for Ependymoblastoma
Explore actively recruiting Ependymoblastoma studies with HealthSpark.
Find actively recruiting studies for Ependymoblastoma 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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