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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Hauptverfasser: Christina Q. Nguyen, Kristine Alba-Concepcion, Elizabeth E. Palmer, Jackie L. Scully, Nicole Millis, Michelle A. Farrar
Format: Artigo
Sprache:Inglês
Veröffentlicht: BMC 2022-04-01
Schriftenreihe:Orphanet Journal of Rare Diseases
Schlagworte:
Advanced therapeutics
Paediatric neurology
Patient advocacy
Precision medicine
Online Zugang:https://doi.org/10.1186/s13023-022-02317-6
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