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

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 Projec...

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Autores principales: Matthews, Lisa, Chin, Vaughan, Taliangis, Marisa, Samanek, Amanda, Baynam, Gareth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8709987/
https://www.ncbi.nlm.nih.gov/pubmed/34952617
http://dx.doi.org/10.1186/s13023-021-02153-0
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author Matthews, Lisa
Chin, Vaughan
Taliangis, Marisa
Samanek, Amanda
Baynam, Gareth
author_facet Matthews, Lisa
Chin, Vaughan
Taliangis, Marisa
Samanek, Amanda
Baynam, Gareth
author_sort Matthews, Lisa
collection PubMed
description 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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spelling pubmed-87099872022-01-05 Childhood rare diseases and the UN convention on the rights of the child Matthews, Lisa Chin, Vaughan Taliangis, Marisa Samanek, Amanda Baynam, Gareth Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2021-12-24 /pmc/articles/PMC8709987/ /pubmed/34952617 http://dx.doi.org/10.1186/s13023-021-02153-0 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Letter to the Editor
Matthews, Lisa
Chin, Vaughan
Taliangis, Marisa
Samanek, Amanda
Baynam, Gareth
Childhood rare diseases and the UN convention on the rights of the child
title Childhood rare diseases and the UN convention on the rights of the child
title_full Childhood rare diseases and the UN convention on the rights of the child
title_fullStr Childhood rare diseases and the UN convention on the rights of the child
title_full_unstemmed Childhood rare diseases and the UN convention on the rights of the child
title_short Childhood rare diseases and the UN convention on the rights of the child
title_sort childhood rare diseases and the un convention on the rights of the child
topic Letter to the Editor
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8709987/
https://www.ncbi.nlm.nih.gov/pubmed/34952617
http://dx.doi.org/10.1186/s13023-021-02153-0
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