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Nothing about us without us: Advocacy and engagement in genetic medicine.
Olayiwola, Olabimpe; Castillejo, Adam; Louella, Michael; Supercharger, Moses; Harlow, Evelyn; Dee, Lynda; Abdallah, Khadidja; Kityo-Mutuluuza, Cissy; Adair, Jennifer E; Orentas, Rimas; Dubé, Karine.
Afiliación
  • Olayiwola O; Roivant Social Ventures, New York City, NY, USA.
  • Castillejo A; London Patient, London, UK.
  • Louella M; University of Washington, Seattle, WA, USA.
  • Supercharger M; Joint Adherent Brothers and Sisters Against AIDS (JABASA), Kampala, Uganda.
  • Harlow E; Joint Clinical Research Center (JCRC), Kampala, Uganda.
  • Dee L; AIDS Action Baltimore, Baltimore, MD, USA.
  • Abdallah K; University of Leuven, Leuven, Belgium.
  • Kityo-Mutuluuza C; Joint Clinical Research Center (JCRC), Kampala, Uganda.
  • Adair JE; Fred Hutchinson Cancer Center, Seattle, WA, USA.
  • Orentas R; Caring Cross, Gaithersburg, MD, USA.
  • Dubé K; University of California San Diego (UCSD), San Diego, CA, USA.
Sci Transl Med ; 16(746): eadn2401, 2024 May 08.
Article en En | MEDLINE | ID: mdl-38718133
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.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Defensa del Paciente / Anemia de Células Falciformes Límite: Humans Idioma: En Revista: Sci Transl Med Asunto de la revista: CIENCIA / MEDICINA Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos
Texto completo
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Defensa del Paciente / Anemia de Células Falciformes Límite: Humans Idioma: En Revista: Sci Transl Med Asunto de la revista: CIENCIA / MEDICINA Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos