Emerging roles and opportunities for rare disease patient advocacy groups

BACKGROUND: Patient advocacy groups (PAGs) serve a vital role for rare disease patients and families by providing educational resources, support, and a sense of community. Motivated by patient need, PAGs are increasingly at the forefront of policy, research, and drug development for their disease of...

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Detalles Bibliográficos
Autores principales: Patterson, Amy M., O’Boyle, Megan, VanNoy, Grace E., Dies, Kira A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Original Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10184204/
https://www.ncbi.nlm.nih.gov/pubmed/37197559
http://dx.doi.org/10.1177/26330040231164425

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10184204/
https://www.ncbi.nlm.nih.gov/pubmed/37197559
http://dx.doi.org/10.1177/26330040231164425

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