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The Editorial on the landscape for rare diseases in 20241 offered insight into the challenges faced by people living with a rare disease, highlighting the need for collective action to address their unmet needs. One key issue is the stigma attached to rare disease that generates inequality, marginalisation, discrimination, and exclusion in almost every country in the world, impairing access to, and benefit from, advances in diagnostics and therapeutics, as well as health, social, and community participation and services.
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Pearce et al. (2024) studied this question.
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