Ganglioneuroblastoma
Ganglioneuroblastoma is a rare type of primitive neuroectodermal tumor (PNET; see this term) affecting almost exclusively infants and young children under the age of 10 usually occurring in the posterior mediastinum adrenal medulla and extra-adrenal retroperitoneum (but sometimes in the neck and pelvis) with metastasis most often presenting in the bones and characterized clinically by pain stridor shortness of breath peripheral neurological signs superior vena cava syndrome and congenital Horner syndrome (see this term) depending on the location of the tumor.
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 November 2023
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Ganglioneuroblastoma?
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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.
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
For a list of clinical trials in this disease area, please click here.