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

Olabimpe Olayiwola, Adam Castillejo,Michael Louella, Moses Supercharger, Evelyn Harlow,Lynda Dee,Khadidja Abdallah, Cissy Kityo-Mutuluuza,Jennifer E Adair,Rimas Orentas,Karine Dubé

Science translational medicine（2024）

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摘要

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.

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