Chronic bilirubin encephalopathy

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Synonyms: BIND | Bilirubin-induced neurological dysfunction | CBE | KSD | Kernicterus spectrum disorder

A rare neurologic disease characterized by the chronic consequences of bilirubin toxicity in the globus pallidus sub-thalamic nuclei and other brain regions after exposure to high levels of unconjugated bilirubin in the neonatal period. Symptoms begin after the acute phase of bilirubin encephalopathy in the first year of life evolve slowly over several years and include mild to severe extrapyramidal disturbances (especially dystonia and athetosis) auditory neuropathy spectrum disorder and oculomotor and dental abnormalities.

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 July 2024

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Chronic bilirubin encephalopathy?

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Advocacy Organizations

Mississippi Metabolics Foundation

Our mission at Mississippi Metabolics Foundation (MMF) is to advocate, educate, and support families in MS affected by genetic metabolic disorders/inborn errors of metabolism (IEM's). MMF promotes initiatives and further advancements in legislation, education, research, clinical trials, studies, therapies, targeted treatments, and eventual cures for IEM’s and all rare diseases.

Project CASK

VISION Project CASK believes in a world free of the life limitations and debilitating effects of CASK gene disorders. ​MISSION To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders. ​VALUES Collaboration. Transparency. Urgency.

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Clinical Trials

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