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. 2021 Dec 24;16(1):523.
doi: 10.1186/s13023-021-02153-0.

Childhood rare diseases and the UN convention on the rights of the child

Lisa Matthews  1 , Vaughan Chin  1 , Marisa Taliangis  2 , Amanda Samanek  3 , Gareth Baynam  4
Affiliations

Childhood rare diseases and the UN convention on the rights of the child

Lisa Matthews et al. Orphanet J Rare Dis. .

Abstract

This letter discusses an initiative that considered the rights of a child living with a rare disease in the context of the United Nations Convention on the Rights of the Child (UNCRC). The aim was to inform laypeople on the intersection between the UNCRC and rare and undiagnosed diseases. The Project was initiated in Western Australia for a national audience, with a view that it might also provide a framework that is translatable to other jurisdictions internationally. This letter discusses some of the key themes raised by the Project and the potential for further work.

Keywords: Human rights; Rare disease; United Nations Convention on the Rights of the Child.

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Conflict of interest statement

The authors declare that they have no competing interests.

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