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The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems

BACKGROUND: Rare diseases (RD) are a diverse collection of more than 7–10,000 different disorders, most of which affect a small number of people per disease. Because of their rarity and fragmentation of patients across thousands of different disorders, the medical needs of RD patients are not well r...

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Detalles Bibliográficos
Autores principales: Tisdale, Ainslie, Cutillo, Christine M., Nathan, Ramaa, Russo, Pierantonio, Laraway, Bryan, Haendel, Melissa, Nowak, Douglas, Hasche, Cindy, Chan, Chun-Hung, Griese, Emily, Dawkins, Hugh, Shukla, Oodaye, Pearce, David A., Rutter, Joni L., Pariser, Anne R.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8532301/
https://www.ncbi.nlm.nih.gov/pubmed/34674728
http://dx.doi.org/10.1186/s13023-021-02061-3