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Coming Full Circle: Reflections and Inspirations from a Cystic Fibrosis Patient Scientist Panel.
Nowakowski, Alexandra Xan C H; Balasa, Gabriella Ella; Figueira, Miriam F; LaRosa, Francis Tré J; Lawlor, James M J.
Afiliação
  • Nowakowski AXCH; Florida State University College of Medicine, Director, 12236United States Adult Cystic Fibrosis Association, Orlando, FL, USA.
  • Balasa GE; United States Adult Cystic Fibrosis Association, Richmond, VA, USA.
  • Figueira MF; Cystic Fibrosis Research and Treatment Center, 6797University of North Carolina, Chapel Hill, NC, USA.
  • LaRosa FTJ; BioNews Insights, Washington, DC, USA.
  • Lawlor JMJ; 69980HudsonAlpha Institute for Biotechnology, Huntsville, AL, USA.
Inquiry ; 59: 469580221086921, 2022.
Article em En | MEDLINE | ID: mdl-35420504
Care for many progressive chronic diseases continues to improve, allowing patients to survive and thrive for longer periods of time1. People living with such conditions may now find themselves able to achieve long-term goals in education and career development2. Many people now occupy the dual roles of scientist and patient3. This commentary article synthesizes experiences of scientists and advocates with the progressive genetic disease cystic fibrosis (CF) who collaborated on a career development session for the Cystic Fibrosis Foundation's inaugural ResearchCon event in 2019. It explores how such collaborations affirm and transform individual perspectives on patient science and its importance in broader scientific research agenda setting. We first share our own individual insights about the experience and impact of the ResearchCon panel session before progressing to discussion and future directions centering the shared insights from one another's reflections.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Médicos / Fibrose Cística Limite: Humans Idioma: En Revista: Inquiry Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Estados Unidos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Médicos / Fibrose Cística Limite: Humans Idioma: En Revista: Inquiry Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Estados Unidos