“There's huge value in just bringing people together”: A rare disease organisation community of practice for integrated rare disease care
Authors
Yvonne Zurynski1
Australian Institute Of Health Innovation, Macquarie University, North Ryde, Sydney, New South Wales, Australia
Lauren McKnight
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia
Christina Rojas
Australian Institute Of Health Innovation, Macquarie University, North Ryde, Sydney, New South Wales, Australia
Elizabeth (Emma) Palmer
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia/Sydney Children’s Hospitals Network, Sydney, New South Wales, Australia
Michelle Farrar
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia/Sydney Children’s Hospitals Network, Sydney, New South Wales, Australia
Krista Recsei
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia
Natalie Roberts
Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia
Gareth Baynam
Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases, Perth Children's Hospital, Perth, Western Australia, Australia
DOI: https://doi.org/10.5334/ijic.ICIC25437 | Journal eISSN: 1568-4156
Language: English
Published on: Mar 24, 2026
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 4 issues per year
© 2026 Yvonne Zurynski1, Lauren McKnight, Christina Rojas, Elizabeth (Emma) Palmer, Michelle Farrar, Krista Recsei, Natalie Roberts, Nicole Millis, Louise Healy, Gareth Baynam, Karen Hutchinson, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.