Are rare diseases a universal problem?
Rare diseases are a major child health issue
Rights should be available to children
Children learn to use their rights
Children have the right to a full life
Children have the right to a name, a nationality, a family life and a diagnosis
Respect the right to a name, a nationality and family ties
Children have the right to a relationship with both their parents
Rare disease shouldn’t kidnap a child’s future
Children should be involved in decisions about their health when possible
Children have the right to get and share information safely
Children have the right to a language
Children have the right to rare disease support
Children have the right to privacy
Children have the right to access accurate media
All children have the right to appropriate and equitable support from Government services
Children with rare or undiagnosed diseases are sometimes unable to be looked after by their parents
Children across the world are impacted by rare diseases
Children with rare diseases and those with undiagnosed diseases need to be reviewed regularly
Transitions in care must be supported
Family stress due to demands of rare disease and lack of financial help
Family stress due to excessive demands
Access to an education is a basic right for every child
Learning through play
Children with rare diseases must be protected from harm and exploitation
Rare disease and drug treatment
Equal access to medical services and research
Transitions in care must be supported
Rare disease research may help all
Children have the right to be cared for by people who respect them
Right to rescue: extra help for children
National Action for Rare Disease
Rare aware
Photo credit: Photo by Nicole Adams on Unsplash
Source: Adapted from 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
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