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'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.
Affiliation
  • Nguyen CQ; Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia.
  • Kariyawasam D; Department of Neurology, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
  • Alba-Concepcion K; Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia.
  • Grattan S; Department of Neurology, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
  • Hetherington K; Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia.
  • Wakefield CE; Department of Neurology, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
  • Woolfenden S; Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia.
  • Dale RC; Department of Neurology, Sydney Children's Hospital Network, Randwick, New South Wales, Australia.
  • Palmer EE; Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, UNSW Sydney, Sydney, New South Wales, Australia.
  • Farrar MA; Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, Randwick, New South Wales, Australia.
Health Expect ; 25(6): 3175-3191, 2022 12.
Article in En | MEDLINE | ID: mdl-36307981
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Rare Diseases / Health Literacy Type of study: Guideline / Prognostic_studies / Qualitative_research Limits: Child / Humans Language: En Journal: Health Expect Journal subject: PESQUISA EM SERVICOS DE SAUDE / SAUDE PUBLICA Year: 2022 Type: Article Affiliation country: Australia
Fulltext
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PubMed Links
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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Rare Diseases / Health Literacy Type of study: Guideline / Prognostic_studies / Qualitative_research Limits: Child / Humans Language: En Journal: Health Expect Journal subject: PESQUISA EM SERVICOS DE SAUDE / SAUDE PUBLICA Year: 2022 Type: Article Affiliation country: Australia