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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 Data version November 2023

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Advocacy Organizations

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.


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Clinical Trials

For a list of clinical trials in this disease area, please click here.