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 September 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 supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.
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
VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. VALUES Collaboration. Transparency. Urgency.
SALUS
Educate and provide resources to POC with Rare Cancers
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Clinical Trials
For a list of clinical trials in this disease area, please click here.