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

Author:

Matthews Lisa,Chin Vaughan,Taliangis Marisa,Samanek Amanda,Baynam GarethORCID

Abstract

AbstractThis 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.

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Reference16 articles.

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3. UN General Assembly. Convention on the rights of the child. In: United Nations treaty series. New York: United Nations. 1989. https://treaties.un.org/doc/Publication/UNTS/Volume%201577/v1577.pdf. Accessed 4 Nov 2018.

4. Wakap SN, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28(2):165–73.

5. The Lancet Diabetes & Endocrinology. Spotlight on rare diseases. Lancet Diabetes Endocrinol. 2019;7(2):75. https://doi.org/10.1016/S2213-8587(19)30006-3.

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