“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; Krista Recsei; Lauren McKnight; Natalie Roberts; RArEST Consortium; Adam Jaffe

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^*, Krista Recsei, Lauren McKnight, Natalie Roberts, RArEST Consortium, Adam Jaffe

^*Corresponding author for this work

Australian Institute of Health Innovation

Research output: Contribution to journal › Comment/opinion › peer-review

3 Citations (Scopus)

19 Downloads (Pure)

Original language	English
Article number	105710
Pages (from-to)	1-4
Number of pages	4
Journal	EBioMedicine
Volume	115
DOIs	https://doi.org/10.1016/j.ebiom.2025.105710
Publication status	Published - May 2025

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Copyright the Author(s) 2025. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

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10.1016/j.ebiom.2025.105710Licence: CC BY-NC-ND

Publisher version (open access)Final published version, 793 KBLicence: CC BY-NC-ND

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Palmer, E. E., Recsei, K., McKnight, L., Roberts, N., RArEST Consortium, & Jaffe, A. (2025). “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. EBioMedicine, 115, 1-4. Article 105710. https://doi.org/10.1016/j.ebiom.2025.105710

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title = "“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",

author = "Palmer, \{Elizabeth Emma\} and Krista Recsei and Lauren McKnight and Natalie Roberts and \{RArEST Consortium\} and Gareth Baynam and Yvonne Zurynski and Michelle Farrar and Louise Healy and Nicole Millis and Adam Jaffe",

note = "Copyright the Author(s) 2025. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.",

year = "2025",

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doi = "10.1016/j.ebiom.2025.105710",

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Palmer, EE, Recsei, K, McKnight, L, Roberts, N, RArEST Consortium & Jaffe, A 2025, '“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', EBioMedicine, vol. 115, 105710, pp. 1-4. https://doi.org/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. / Palmer, Elizabeth Emma; Recsei, Krista; McKnight, Lauren et al.
In: EBioMedicine, Vol. 115, 105710, 05.2025, p. 1-4.

Research output: Contribution to journal › Comment/opinion › peer-review

TY - JOUR

T1 - “You get left behind and lost in a complex world of rare care”

T2 - equity in access to rare disease care—learnings from the Australian Rare Disease Awareness, Education, Support, and Training (RArEST) project

AU - Palmer, Elizabeth Emma

AU - Recsei, Krista

AU - McKnight, Lauren

AU - Roberts, Natalie

AU - RArEST Consortium

AU - Baynam, Gareth

AU - Zurynski, Yvonne

AU - Farrar, Michelle

AU - Healy, Louise

AU - Millis, Nicole

AU - Jaffe, Adam

N1 - Copyright the Author(s) 2025. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

PY - 2025/5

Y1 - 2025/5

UR - https://www.scopus.com/pages/publications/105002488689

U2 - 10.1016/j.ebiom.2025.105710

DO - 10.1016/j.ebiom.2025.105710

M3 - Comment/opinion

C2 - 40239463

AN - SCOPUS:105002488689

SN - 2352-3964

VL - 115

SP - 1

EP - 4

JO - EBioMedicine

JF - EBioMedicine

M1 - 105710

ER -

“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

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