"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

doi:10.1016/j.ebiom.2025.105710

. 2025 May:115:105710.

doi: 10.1016/j.ebiom.2025.105710. Epub 2025 Apr 15.

"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

Elizabeth Emma Palmer¹, Krista Recsei², Lauren McKnight², Natalie Roberts²; RArEST Consortium; Adam Jaffe³

Collaborators, Affiliations

Collaborators

RArEST Consortium:
Gareth Baynam, Yvonne Zurynski, Michelle Farrar, Louise Healy, Nicole Millis, Yvonne Zurynski

Affiliations

¹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia; Sydney Children's Hospitals Network, Randwick, New South Wales, Australia. Electronic address: elizabeth.palmer@unsw.edu.au.
² Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia.
³ Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia; Sydney Children's Hospitals Network, Randwick, New South Wales, Australia.

PMID: 40239463
PMCID: PMC12020900
DOI: 10.1016/j.ebiom.2025.105710

"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

Elizabeth Emma Palmer et al. EBioMedicine. 2025 May.

. 2025 May:115:105710.

doi: 10.1016/j.ebiom.2025.105710. Epub 2025 Apr 15.

Authors

Elizabeth Emma Palmer¹, Krista Recsei², Lauren McKnight², Natalie Roberts²; RArEST Consortium; Adam Jaffe³

Collaborators

RArEST Consortium:
Gareth Baynam, Yvonne Zurynski, Michelle Farrar, Louise Healy, Nicole Millis, Yvonne Zurynski

Affiliations

¹ Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia; Sydney Children's Hospitals Network, Randwick, New South Wales, Australia. Electronic address: elizabeth.palmer@unsw.edu.au.
² Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia.
³ Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, New South Wales, Australia; Sydney Children's Hospitals Network, Randwick, New South Wales, Australia.

PMID: 40239463
PMCID: PMC12020900
DOI: 10.1016/j.ebiom.2025.105710

No abstract available

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Conflict of interest statement

Declaration of interests The RArEST Project was funded by the Australian Government Department of Health and Aged Care. EEP is a member of the Rare Voices Australia (RVA) Scientific and Medical Advisory Committee and receives flights and accommodation to attend RVA meetings. AJ has received speaker fees from Vertex Pharmaceuticals in the last 24 months, and in the last 36 months has been the Chair of the RVA Scientific and Medical Advisory Committee. LM, KR, and NR declare no competing interests.

Figures

**Fig. 1**
Co-designed resources from the RArEST Project.

See this image and copyright information in PMC

References

1. Wang C.M., et al. Operational description of rare diseases: a reference to improve the recognition and visibility of rare diseases. Orphanet J Rare Dis. 2024;19(1):334. - PMC - PubMed
1. Australian Government Department of Health . 2020. National strategic action plan for rare diseases.https://www.health.gov.au/resources/publications/national-strategic-acti... Available from: Accessed 2023 January.
1. Bhattacharya K., et al. Rare diseases research and policy in Australia: on the journey to equitable care. J Paediatr Child Health. 2021;57(6):778–781. - PubMed
1. Gunne E., et al. A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland. Orphanet J Rare Dis. 2020;15(1):311. - PMC - PubMed
1. Teutsch S., et al. Australian children living with rare diseases: health service use and barriers to accessing care. World J Pediatr. 2023;19(7):701–709. - PMC - PubMed

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Full Text Sources

[1] Wang C.M., et al. Operational description of rare diseases: a reference to improve the recognition and visibility of rare diseases. Orphanet J Rare Dis. 2024;19(1):334. - PMC - PubMed

[2] Wang C.M., et al. Operational description of rare diseases: a reference to improve the recognition and visibility of rare diseases. Orphanet J Rare Dis. 2024;19(1):334. - PMC - PubMed

[3] Australian Government Department of Health . 2020. National strategic action plan for rare diseases.https://www.health.gov.au/resources/publications/national-strategic-acti... Available from: Accessed 2023 January.

[4] Australian Government Department of Health . 2020. National strategic action plan for rare diseases.https://www.health.gov.au/resources/publications/national-strategic-acti... Available from: Accessed 2023 January.

[5] Bhattacharya K., et al. Rare diseases research and policy in Australia: on the journey to equitable care. J Paediatr Child Health. 2021;57(6):778–781. - PubMed

[6] Bhattacharya K., et al. Rare diseases research and policy in Australia: on the journey to equitable care. J Paediatr Child Health. 2021;57(6):778–781. - PubMed

[7] Gunne E., et al. A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland. Orphanet J Rare Dis. 2020;15(1):311. - PMC - PubMed

[8] Gunne E., et al. A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland. Orphanet J Rare Dis. 2020;15(1):311. - PMC - PubMed

[9] Teutsch S., et al. Australian children living with rare diseases: health service use and barriers to accessing care. World J Pediatr. 2023;19(7):701–709. - PMC - PubMed

[10] Teutsch S., et al. Australian children living with rare diseases: health service use and barriers to accessing care. World J Pediatr. 2023;19(7):701–709. - PMC - PubMed

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"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

Collaborators

Affiliations

"You get left behind and lost in a complex world of rare care": equity in access to rare disease care-learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

Authors

Collaborators

Affiliations

Conflict of interest statement

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Conflict of interest statement

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