‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics
Nguyen, Christina Q., Kariyawasam, Didu, Alba‐Concepcion, Kristine, Grattan, Sarah, Hetherington, Kate, Wakefield, Claire E., Woolfenden, Susan, Dale, Russell C., Palmer, Elizabeth E., Farrar, Michelle A.
Published in Health expectations : an international journal of public participation in health care and health policy (01.12.2022)
Published in Health expectations : an international journal of public participation in health care and health policy (01.12.2022)
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Journal Article
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review
Nguyen, Christina Q, Alba-Concepcion, Kristine, Palmer, Elizabeth E, Scully, Jackie L, Millis, Nicole, Farrar, Michelle A
Published in Orphanet journal of rare diseases (18.04.2022)
Published in Orphanet journal of rare diseases (18.04.2022)
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Journal Article
‘High hopes for treatment’: Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases
Nguyen, Christina Q., Kariyawasam, Didu S. T., Ngai, Tsz Shun Jason, Nguyen, James, Alba‐Concepcion, Kristine, Grattan, Sarah E., Palmer, Elizabeth E., Hetherington, Kate, Wakefield, Claire E., Dale, Russell C., Woolfenden, Sue, Mohammad, Shekeeb, Farrar, Michelle A.
Published in Health expectations : an international journal of public participation in health care and health policy (01.06.2024)
Published in Health expectations : an international journal of public participation in health care and health policy (01.06.2024)
Get full text
Journal Article