Developing a community-led rare disease ELSI research agenda

Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disea...

Source: Orphanet Journal of Rare Diseases - January 22, 2024 Category: Internal Medicine Authors: Courtney Berrios, Macy McBeth, Andrea Bradley-Ewing, Nikolaus Schuetz, Annette Campbell, Zohreh Talebizadeh, Jeremy R. Garrett, Tamara Falicov, Francisco Martinez and Emily A. Hurley Tags: Review Source Type: research