Nothing about us without us: Advocacy and engagement in genetic medicine

The development of new genetic medicines to treat sickle cell disease highlights the need for greater collaboration between researchers and people with lived experiences. Drawing on the adage "Nothing about us, without us," we call for increased investments in community advocacy and engage...

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Bibliographic Details
Published in:Science translational medicine 2024-05, Vol.16 (746), p.eadn2401-eadn2401
Main Authors: Olayiwola, Olabimpe, Castillejo, Adam, Louella, Michael, Supercharger, Moses, Harlow, Evelyn, Dee, Lynda, Abdallah, Khadidja, Kityo-Mutuluuza, Cissy, Adair, Jennifer E, Orentas, Rimas, Dubé, Karine
Format: Article
Language:English
Subjects:
Anemia, Sickle Cell - genetics
Genetic Therapy
Humans
Patient Advocacy
Sickle cell disease
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Summary:The development of new genetic medicines to treat sickle cell disease highlights the need for greater collaboration between researchers and people with lived experiences. Drawing on the adage "Nothing about us, without us," we call for increased investments in community advocacy and engagement.
ISSN:1946-6234
1946-6242
1946-3242
DOI:10.1126/scitranslmed.adn2401