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Patient engagement and involvement in rare disease research
Megan O’Boyle is the parent of a 22-year-old daughter with a rare neurodevelopmental disease. She is currently the Patient Engagement Lead of the RARE-X Data Collection Program at Global Genes, a collaborative platform for global data sharing and analysis created to accelerate treatments for rare di...
| Formato: | Online Artículo Texto |
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| Lenguaje: | English |
| Publicado: |
Nature Publishing Group UK
2023
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9974951/ https://www.ncbi.nlm.nih.gov/pubmed/36854838 http://dx.doi.org/10.1038/s43856-023-00251-7 |