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Authors
Sivaramakrishnan, Hamsini
Reilly, Madison
Jaffe, Adam
Baynam, Gareth
Helwani, Falak
McKenzie, Anne
Finlay-Jones, Amy
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Funding
Funding for this research was provided by:
Rare Voices Australia
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More Information
Article History
Received: 3 November 2025
Accepted: 8 January 2026
First Online: 17 January 2026
Declarations
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: Ethical approval was obtained for this project from The University of Western Australia Human Research Ethics Committee (2024/ET000158).
: FH is a paid employee of Rare Voices Australia. However, the outcomes of this work are based on views gathered from individuals across the rare disease sector and do not necessarily represent the views of Rare Voices Australia.
