Of the 6,000 known rare diseases, 75% affect children. In order to ensure the care and services they receive meets their needs, it is imperative to understand children and young people’s views, preferences, and the challenges that they face.
Children and young people see and experience things differently to adults. Therefore relying on the views of the adults involved in their care – such as their carers, parents and healthcare professionals – to provide insight into what it can mean to be a child or young person affected by a rare disease will not suffice.
This report is the result of a project that, through imaginative and creative techniques, provided children and young people with the opportunity to share their stories, in their own words. This gives us a valuable glimpse into their rare disease experience, as they see it.
The report highlights a number of key findings:
Children affected by rare disease are adaptive, resilient and do not see their rare disease as a fundamental part of their identity.
There are aspects of their care that children think could be improved.
The people that care for children, both at hospital and at home, play an important role in shaping children’s experience of living with rare disease.
Children’s needs and challenges change as they get older, meaning the experience of young people is often very different to that of children.
Siblings understand a great deal about their brother or sister’s care and develop skills in empathy and compassion, despite facing challenges.
We hope this report will lead to further initiatives that work to understand children’s experiences of rare disease, and that considers – and truly listens to – their point of view.