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Raring for change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies

• The Epilepsies’ landscape has dramatically changed with increased rare epilepsy diagnoses, organizations, and therapeutic targets. • Many rare epilepsies lack standardized clinical guidelines and cures and interventions to improve developmental outcomes and quality of life. • The Rare Epilepsy Lan...

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Detalles Bibliográficos
Autor principal: Miller, Ilene Penn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Published by Elsevier Inc. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7395595/
https://www.ncbi.nlm.nih.gov/pubmed/32759063
http://dx.doi.org/10.1016/j.yebeh.2020.107276
Descripción
Sumario:• The Epilepsies’ landscape has dramatically changed with increased rare epilepsy diagnoses, organizations, and therapeutic targets. • Many rare epilepsies lack standardized clinical guidelines and cures and interventions to improve developmental outcomes and quality of life. • The Rare Epilepsy Landscape Analysis (RELA) was a first-of-its-kind qualitative analysis of 44 rare epilepsy organizations. • Common challenges emerged around multi-disciplinary care access, population burden, and research funding commensurate with opportunities. • Consensus among Rares to develop Rare Epilepsy Centers of Excellence, a National Epilepsy Registry, and new paradigms and funding for research.