Orphanet Journal of Rare Diseases (Dec 2021)

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

  • Lisa Matthews,
  • Vaughan Chin,
  • Marisa Taliangis,
  • Amanda Samanek,
  • Gareth Baynam

DOI
https://doi.org/10.1186/s13023-021-02153-0
Journal volume & issue
Vol. 16, no. 1
pp. 1 – 9

Abstract

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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.

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