ArticleOrphanet journal of rare diseases2021
Childhood rare diseases and the UN convention on the rights of the child.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed.
- Exploring needs and priorities in digital health management for rare disease patients and their caregivers: A mixed-methods study.PLOS digital health · 2026Article
- Improving shared decision‑making between paediatric haematologists, children with sickle cell disease, and their parents: an observational post-intervention study.European journal of pediatrics · 2025Observational
- 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.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2024Article
- [Rare diseases in a medical genetics service of population with social security].Revista medica del Instituto Mexicano del Seguro Social · 2024Article
- Bridging the 13-Year Evidence Gap: A Time for Age-Inclusive Research.Journal of the American Society of Nephrology : JASN · 2024Article
- Data saves lives: optimising routinely collected clinical data for rare disease research.Orphanet journal of rare diseases · 2023Article
- Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review.Pediatric reports · 2023Review
- 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.International journal of environmental research and public health · 2022Article
- Factors of family impact in a Swedish-German cohort of children born with esophageal atresia.Orphanet journal of rare diseases · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.