儿童罕见病与《联合国儿童权利公约》。
Childhood rare diseases and the UN convention on the rights of the child.
机构信息
University of Western Australia, Perth, Australia.
Corrs Chambers Westgarth, Perth, Australia.
出版信息
Orphanet J Rare Dis. 2021 Dec 24;16(1):523. doi: 10.1186/s13023-021-02153-0.
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.
摘要
这封信讨论了一项倡议，该倡议从《联合国儿童权利公约》（UNCRC）的角度考虑了患有罕见疾病的儿童的权利。目的是向非专业人士介绍《联合国儿童权利公约》与罕见病和未确诊疾病之间的交集。该项目在澳大利亚西部发起，面向全国受众，希望它也能为其他国际司法管辖区提供一个可转化的框架。这封信讨论了该项目提出的一些关键主题及其进一步工作的潜力。
相似文献
1
Childhood rare diseases and the UN convention on the rights of the child.
Orphanet J Rare Dis. 2021 Dec 24;16(1):523. doi: 10.1186/s13023-021-02153-0.
2
Indigenous ontology, international law and the application of the Convention to the over-representation of Indigenous children in out of home care in Canada and Australia.
Child Abuse Negl. 2020 Dec;110(Pt 1):104587. doi: 10.1016/j.chiabu.2020.104587. Epub 2020 Jun 15.
3
Promotion of children's rights and prevention of child maltreatment.
Lancet. 2009 Jan 24;373(9660):332-43. doi: 10.1016/S0140-6736(08)61709-2. Epub 2008 Dec 4.
4
Human rights and child health.
J Paediatr Child Health. 2007 Sep;43(9):581-6. doi: 10.1111/j.1440-1754.2007.01147.x.
5
Children's rights in pediatrics.
Eur J Pediatr. 2011 Jan;170(1):9-14. doi: 10.1007/s00431-010-1205-8. Epub 2010 May 12.
6
The Child-Friendly Healthcare Initiative (CFHI): Healthcare provision in accordance with the UN Convention on the Rights of the Child. Child Advocacy International. Department of Child and Adolescent Health and Development of the World Health Organization (WHO). Royal College of Nursing (UK). Royal College of Paediatrics and Child Health (UK). United Nations Children's Fund (UNICEF).
Pediatrics. 2000 Nov;106(5):1054-64. doi: 10.1542/peds.106.5.1054.
7
Resolution No. 43/112. Question of a convention on the rights of the child, 8 December 1988.
Annu Rev Popul Law. 1988;15:113, 496-7.
8
The ILO and the new UN convention on migrant workers: the past and future.
Int Migr Rev. 1991 Winter;25(4):698-709.
9
Children's rights and dental care treatment.
Eur J Paediatr Dent. 2024 Mar 1;25(1):3. doi: 10.23804/ejpd.2024.25.01.01.
10
Children's Rights and the United Nations Convention on the Rights of the Child.
Pediatrics. 2003 Sep;112(3 Part 2):742-5.
引用本文的文献
1
Improving shared decision‑making between paediatric haematologists, children with sickle cell disease, and their parents: an observational post-intervention study.
Eur J Pediatr. 2025 Jun 12;184(7):417. doi: 10.1007/s00431-025-06241-2.
2
[Rare diseases in a medical genetics service of population with social security].
Rev Med Inst Mex Seguro Soc. 2024 May 6;62(3):1-8. doi: 10.5281/zenodo.10998859.
3
Disease-specific quality of life as part of the long-term follow-up for children born with esophageal atresia in an academic unit in South Africa-a pilot study.
Dis Esophagus. 2024 Jul 3;37(7). doi: 10.1093/dote/doae016.
4
Bridging the 13-Year Evidence Gap: A Time for Age-Inclusive Research.
J Am Soc Nephrol. 2024 Apr 1;35(4):502-504. doi: 10.1681/ASN.0000000000000301. Epub 2024 Jan 15.
5
Data saves lives: optimising routinely collected clinical data for rare disease research.
Orphanet J Rare Dis. 2023 Sep 11;18(1):285. doi: 10.1186/s13023-023-02912-1.
6
Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.
Pediatr Rep. 2023 Aug 9;15(3):462-482. doi: 10.3390/pediatric15030043.
7
Reliability and Validity of the Polish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia.
Int J Environ Res Public Health. 2022 Jun 30;19(13):8047. doi: 10.3390/ijerph19138047.
8
Factors of family impact in a Swedish-German cohort of children born with esophageal atresia.
Orphanet J Rare Dis. 2022 May 21;17(1):207. doi: 10.1186/s13023-022-02361-2.
本文引用的文献
1
Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database.
Eur J Hum Genet. 2020 Feb;28(2):165-173. doi: 10.1038/s41431-019-0508-0. Epub 2019 Sep 16.
2
Spotlight on rare diseases.
Lancet Diabetes Endocrinol. 2019 Feb;7(2):75. doi: 10.1016/S2213-8587(19)30006-3.
3
International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases.
Am J Hum Genet. 2017 May 4;100(5):695-705. doi: 10.1016/j.ajhg.2017.04.003.
4
The risk of re-identification versus the need to identify individuals in rare disease research.
Eur J Hum Genet. 2016 Nov;24(11):1553-1558. doi: 10.1038/ejhg.2016.52. Epub 2016 May 25.
5
The battlefield of rare diseases: where uncommon insights are common.
Sci Transl Med. 2012 Oct 3;4(154):154ed7. doi: 10.1126/scitranslmed.3004980.
6
The need for worldwide policy and action plans for rare diseases.
Acta Paediatr. 2012 Aug;101(8):805-7. doi: 10.1111/j.1651-2227.2012.02705.x. Epub 2012 May 11.
7
Rare childhood diseases: how should we respond?
Arch Dis Child. 2008 Dec;93(12):1071-4. doi: 10.1136/adc.2007.134940. Epub 2008 Aug 6.
8
Why rare diseases are an important medical and social issue.
Lancet. 2008 Jun 14;371(9629):2039-41. doi: 10.1016/S0140-6736(08)60872-7.
9
The common problem of rare disease in general practice.
Med J Aust. 2006 Jul 17;185(2):82-3. doi: 10.5694/j.1326-5377.2006.tb00477.x.
Zotero 插件