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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...
| Autores principales: | , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
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SAGE Publications
2023
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| Materias: | |
| 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 |