Isolated posterior meningocele
Posterior meningocele is a rare neural tube closure defect characterized by the herniation of a cerebrospinal fluid-filled sac that is lined by dura and arachnoid mater through a posterior spina bifida and covered by a layer of skin of variable thickness which may be dysplastic or ulcerated. The spinal cord and nerves are generally not included and function normally although sometimes a tethered cord may be associated. They are most commonly located in the lumbar or sacral region.
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 December 2023
Newly diagnosed with
Isolated posterior meningocele?
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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.
Illinois Spina Bifida Association
The Illinois Spina Bifida Association works to improve the quality of life of children, adults, and families living with spina bifida.
Moonshots for Unicorns
Curing single-gene disorders
Project CASK
To fund research for treatment and/or a cure for CASK Gene Disorder
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.