Childhood rare diseases and the UN Convention on the Rights of the Child
A new article has been published in the Orphanet Journal of Rare Diseases aiming at analysing the intersection between the United Nations Convention on the Rights of the Child (UNCRC) and rare and undiagnosed diseases. In this study, an Australian working group used the UNCRC as a framework for considering the challenges faced by children living with rare disease in Australia. The study reveals that when applied to the childhood rare disease experience, the provisions of the UNCRC show that rare diseases of childhood impact not only health, but also fundamental human rights. Indeed, the group identified four themes of the UNCRC that are of a particular relevance for childhood rare diseases: the right for advocacy and support, the right to healthcare, the right to global effort, and the right to an opinion and privacy. For children with rare diseases, the increased stress and financial burden induced by their conditions make them particularly in need for increased advocacy and support. The study highlight that this support should include extra financial assistance due to disease-related costs. When it comes to the right to healthcare, the challenges in diagnosis and treatment faced by children with rare diseases make them especially vulnerable. The study shows that increased funding for rare disease research can contribute to better healthcare for all disorders. The study also reveals that the need for global effort and international cooperation is particularly relevant to fight rare diseases, notably in terms of data and information sharing as well as financial assistance. Finally, the right to an opinion and privacy for children with rare diseases should be guaranteed by a data sharing system that maintains privacy and informed consent.
