Childhood rare diseases and the UN convention on the rights of the child.
Human rights
Rare disease
United Nations Convention on the Rights of the Child
Journal
Orphanet journal of rare diseases
ISSN: 1750-1172
Titre abrégé: Orphanet J Rare Dis
Pays: England
ID NLM: 101266602
Informations de publication
Date de publication:
24 12 2021
24 12 2021
Historique:
received:
14
06
2021
accepted:
06
12
2021
entrez:
25
12
2021
pubmed:
26
12
2021
medline:
12
3
2022
Statut:
epublish
Résumé
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.
Identifiants
pubmed: 34952617
doi: 10.1186/s13023-021-02153-0
pii: 10.1186/s13023-021-02153-0
pmc: PMC8709987
doi:
Types de publication
Letter
Langues
eng
Sous-ensembles de citation
IM
Pagination
523Informations de copyright
© 2021. The Author(s).
Références
Arch Dis Child. 2008 Dec;93(12):1071-4
pubmed: 18684747
Eur J Hum Genet. 2016 Nov;24(11):1553-1558
pubmed: 27222291
Lancet Diabetes Endocrinol. 2019 Feb;7(2):75
pubmed: 30683214
Am J Hum Genet. 2017 May 4;100(5):695-705
pubmed: 28475856
Med J Aust. 2006 Jul 17;185(2):82-3
pubmed: 16842062
Lancet. 2008 Jun 14;371(9629):2039-41
pubmed: 18555915
Acta Paediatr. 2012 Aug;101(8):805-7
pubmed: 22519914
Sci Transl Med. 2012 Oct 3;4(154):154ed7
pubmed: 23035044
Eur J Hum Genet. 2020 Feb;28(2):165-173
pubmed: 31527858