Ogden syndrome
Synonyms: Premature aging appearance-developmental delay-cardiac arrhythmia syndrome
Ogden syndrome is a rare genetic progeroid syndrome characterized by a variable phenotype including postnatal growth delay severe global developmental delay hypotonia non-specific dysmorphic facies with aged appearance and cryptorchidism as well as cardiac arrthymias and skeletal anomalies. Patients typically present with widely opened fontanels mainly truncal hypotonia a waddling gait with hypertonia of the extremities small hands and feet broad great toes scoliosis and redundant skin with lack of subcutaneous fat.
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
Ogden syndrome?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
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.
DDX3X Foundation
Our mission is to connect families, resources, and the medical community to advance research for a treatment or cure to DDX3X Syndrome. Our ultimate goal is to accelerate brain function in individuals affected by DDX3X Syndrome through advances in cell and gene therapy and pharmaceuticals.
Moonshots for Unicorns
Curing single-gene disorders
Ogden C.A.R.E.S.
Our mission at Ogden CARES is to empower affected families by providing resources and supporting research in pursuit of a cure for Ogden Syndrome. We strive to provide dedicated support to families impacted by this ultra rare disorder, raise awareness about Ogden Sybdrome, and build a reciprocal network throughout the rare disease community.
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.