‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics

Author:

Nguyen Christina Q.12ORCID,Kariyawasam Didu12ORCID,Alba‐Concepcion Kristine12ORCID,Grattan Sarah12ORCID,Hetherington Kate13ORCID,Wakefield Claire E.13ORCID,Woolfenden Susan14ORCID,Dale Russell C.25ORCID,Palmer Elizabeth E.16ORCID,Farrar Michelle A.12ORCID

Affiliation:

1. Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health UNSW Sydney Sydney New South Wales Australia

2. Department of Neurology Sydney Children's Hospital Network Randwick New South Wales Australia

3. Behavioural Sciences Unit, Kids Cancer Centre Sydney Children's Hospital Randwick New South Wales Australia

4. Sydney Institute Women Children and their Families Sydney New South Wales Australia

5. Children's Hospital at Westmead Clinical School University of Sydney Westmead New South Wales Australia

6. Centre for Clinical Genetics Sydney Children's Hospital Network Randwick New South Wales Australia

Publisher

Wiley

Subject

Public Health, Environmental and Occupational Health

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