'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.
Christina Q NguyenDidu S T KariyawasamKristine ConcepcionSarah E GrattanKate HetheringtonClaire E WakefieldSusan R WoolfendenRussell C DaleEmma Elizabeth PalmerMichelle Anne FarrarPublished in: Health expectations : an international journal of public participation in health care and health policy (2022)
In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.
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