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. 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 Palmer  1 , Krista Recsei  2 , Lauren McKnight  2 , Natalie Roberts  2 ; RArEST Consortium; Adam Jaffe  3
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

Elizabeth Emma Palmer et al. EBioMedicine. 2025 May.
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
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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