‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics

INTRODUCTION: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neuro...

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Detalles Bibliográficos
Autores principales: Nguyen, Christina Q., Kariyawasam, Didu, Alba‐Concepcion, Kristine, Grattan, Sarah, Hetherington, Kate, Wakefield, Claire E., Woolfenden, Susan, Dale, Russell C., Palmer, Elizabeth E., Farrar, Michelle A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Original Articles
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9700154/
https://www.ncbi.nlm.nih.gov/pubmed/36307981
http://dx.doi.org/10.1111/hex.13625

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9700154/
https://www.ncbi.nlm.nih.gov/pubmed/36307981
http://dx.doi.org/10.1111/hex.13625

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