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“There's huge value in just bringing people together”: A rare disease organisation community of practice for integrated rare disease care Cover

“There's huge value in just bringing people together”: A rare disease organisation community of practice for integrated rare disease care

Open Access
|Mar 2026

Authors

Yvonne Zurynski1

karen.hutchinson@unsw.edu.au

Australian Institute Of Health Innovation, Macquarie University, North Ryde, Sydney, New South Wales, Australia

Lauren McKnight

karen.hutchinson@unsw.edu.au

Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia

Christina Rojas

karen.hutchinson@unsw.edu.au

Australian Institute Of Health Innovation, Macquarie University, North Ryde, Sydney, New South Wales, Australia

Elizabeth (Emma) Palmer

karen.hutchinson@unsw.edu.au

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

karen.hutchinson@unsw.edu.au

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

karen.hutchinson@unsw.edu.au

Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia

Natalie Roberts

karen.hutchinson@unsw.edu.au

Discipline of Paediatrics and Child Health, School of Clinical Medicine, University of New South Wales, Sydney, New South Wales, Australia

Nicole Millis

karen.hutchinson@unsw.edu.au

Rare Voices Australia, Mentone, Victoria, Australia

Louise Healy

karen.hutchinson@unsw.edu.au

Rare Voices Australia, Mentone, Victoria, Australia

Gareth Baynam

karen.hutchinson@unsw.edu.au

Rare Care Clinical Centre of Expertise for Rare and Undiagnosed Diseases, Perth Children's Hospital, Perth, Western Australia, Australia

Karen Hutchinson

karen.hutchinson@unsw.edu.au

University of New South Wales, Sydney, Australia
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.