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

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

Afiliação

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 em En | MEDLINE | ID: mdl-38718133

ABSTRACT

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.

Assuntos

Anemia Falciforme; Defesa do Paciente; Humanos; Anemia Falciforme/genética; Terapia Genética

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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Defesa do Paciente / Anemia Falciforme Limite: Humans Idioma: En Revista: Sci Transl Med Assunto da revista: CIENCIA / MEDICINA Ano de publicação: 2024 Tipo de documento: Article País de afiliação: Estados Unidos

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