Diffuse intrinsic pontine glioma
Synonyms: DIPG
A rare glial tumor characterized by a highly aggressive diffusely infiltrative pontine lesion generally occurring in children affecting local nerve fiber tracts and spreading contiguously to involve adjacent structures but also metastasizing within the central nervous system. Patients mostly present with a short history of symptoms typically including the classic triad of multiple cranial neuropathies long tract signs and ataxia. Signs and symptoms of increased intracranial pressure may present due to obstructive hydrocephalus. Prognosis is poor and not related to histological grade.
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 October 2023.
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Diffuse intrinsic pontine glioma?
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Advocacy Organizations
Pediatric Brain Tumor Foundation
The Pediatric Brain Tumor Foundation (PBTF) leads the way in ending the childhood cancer community’s biggest crisis through research funding, family support and advocacy. Dedicated wholly to addressing this rare, but devastating disease, we are guided by the experiences of patients, survivors, their parents, and siblings.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain Inc
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain 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.
SALUS
Educate and provide resources to POC with Rare Cancers
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
Clinical Trials
For a list of clinical trials in this disease area, please click here.