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...

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Detalles Bibliográficos
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group UK 2023
Materias:
Q&A
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
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description 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 diseases. In this Q&A, we ask Megan a series of questions on patient engagement and involvement in rare disease research.
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spelling pubmed-99749512023-03-02 Patient engagement and involvement in rare disease research Commun Med (Lond) Q&A 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 diseases. In this Q&A, we ask Megan a series of questions on patient engagement and involvement in rare disease research. Nature Publishing Group UK 2023-02-28 /pmc/articles/PMC9974951/ /pubmed/36854838 http://dx.doi.org/10.1038/s43856-023-00251-7 Text en © Springer Nature Limited 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Q&A
Patient engagement and involvement in rare disease research
title Patient engagement and involvement in rare disease research
title_full Patient engagement and involvement in rare disease research
title_fullStr Patient engagement and involvement in rare disease research
title_full_unstemmed Patient engagement and involvement in rare disease research
title_short Patient engagement and involvement in rare disease research
title_sort patient engagement and involvement in rare disease research
topic Q&A
url 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

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