Nothing about us without us: Advocacy and engagement in genetic medicine.
editorial · Level V
Where this comes from
- Record sourced from PubMed, PMID 38718133.
- Also identified by DOI 10.1126/scitranslmed.adn2401.
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Abstract
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.
Medical subject headings
- Patient Advocacy
- Anemia, Sickle Cell