The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review

Abstract Background The patient voice is becoming increasingly prominent across all stages of therapeutic innovation. It pervades research domains from funding and recruitment, to translation, care, and support. Advances in genomic technologies have facilitated novel breakthrough therapies, whose gl...

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Главные авторы: Christina Q. Nguyen, Kristine Alba-Concepcion, Elizabeth E. Palmer, Jackie L. Scully, Nicole Millis, Michelle A. Farrar
Формат: Artigo
Язык:Inglês
Опубликовано: BMC 2022-04-01
Серии:Orphanet Journal of Rare Diseases
Предметы:
Advanced therapeutics
Paediatric neurology
Patient advocacy
Precision medicine
Online-ссылка:https://doi.org/10.1186/s13023-022-02317-6
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