Medulloblastoma with extensive nodularity
Synonyms: MBEN
Medulloblastoma with extensive nodularity (MBEN) is a histological variant of medulloblastoma (see this term) an embryonic malignancy most often located in the inferior medullary velum and then growing into the fourth ventricle and presenting in infants and young children with symptoms of increased intracranial pressure such as headache listlessness vomiting diplopia and papilledema. It is often associated with Gorlin syndrome (see this term) and has a relatively good prognosis.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version April 2024
Newly diagnosed with
Medulloblastoma with extensive nodularity?
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Advocacy Organizations
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
Moonshots for Unicorns
Curing single-gene disorders
My Faulty Gene
My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.
My Little Sunshine Foundation
My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.
Pediatric Brain Tumor Foundation
The Pediatric Brain Tumor Foundation is committed to leading the way toward a future without childhood cancer. Because of supporters’ generosity, advocacy, and encouragement, thousands of families turn to us each year and find the resources and community support they need on their cancer journey.
Project CASK
To fund research for treatment and/or a cure for CASK Gene Disorder
SALUS
Educate and provide resources to POC with Rare Cancers
Clinical Trials
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