Welcome to the“Inclusive Childhood” portal, created to increase understanding, protect and support the rights of children suffering from rare diseases. As a science journalist and public health researcher specialized in rare diseases, I understand how important it is to discuss and take action in this field.
In this portal, you will also find structured summaries and FAQs on the main articles on the subject published in the Orphanet Journal of Rare Diseases and other open access publications.
Origins of Our Proposal:
This initiative is based on the article called “Childhood rare diseases and the UN convention on the rights of the child“, published in the Letter to the Editor section of the Orphanet Journal of Rare Diseaseson December 24, 2021.
Bibliographic reference:
Matthews, L., Chin, V., Taliangis, M. et al. Childhood rare diseases and the UN Convention on the Rights of the Child. Orphanet J Rare Dis 16, 523 (2021). https://doi.org/10.1186/s13023-021-02153-0
Our Mission: Inspired by the UN Convention on the Rights of the Child (CRC), we want to raise awareness of the problems faced by children suffering from rare diseases. The UNCRC is an essential basis for helping us to communicate your specific needs and problems.
Our team’s main focus is:
Advocacy and Support: We recognize that children with rare diseases face many obstacles. From the challenges that accompany an accurate and early diagnosis to the financial and mental effects on them and their families. Our platform is designed to raise awareness and provide guidance on the rights and needs of these children, in order to promote a more enlightened and informed society.
Global collaboration: When it comes to rare diseases, solidarity and international cooperation are essential. In “Inclusive Childhood”, we emphasize the importance of a global approach that promotes the sharing of resources and knowledge between nations. We can only help and care for children with rare diseases around the world if we unite. This project is the result of a partnership with the Rare Care Center and the Global Nurses Network – Rare Diseases, both based in Australia.
Right to Privacy: Privacy and the sharing of medical data is an important issue in an increasingly connected world. We take responsibility for discussing and defending privacy and informed consent when dealing with sensitive data, especially when it comes to rare diseases.
Conclusion :
The UNCRC is a global treaty that recognizes and protects the rights of all children. We see “Inclusive Childhood” as a call to action. We ask caregivers, family members, society in general and experts to join us in this campaign to raise awareness, research and defend children with rare diseases.
Because all children deserve to be seen, heard and supported.
Researcher in Public Health (ENSP/Fiocruz)
Este post também está disponível em: Português (Portuguese (Brazil))
