Of the 6000 known rare diseases, 75% affect children. In order to ensure care and services meet children’s needs it is imperative to understand their views, preferences, and the challenges that they face.
Children and young people see and experience things very differently to adults. Therefore relying on the views of adult patients or carers to gain insight into what it can be like to be a child or young person affected by rare disease will not suffice.
This report is the result of a project that, through imaginative and creative techniques, provided children and young people 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.
This report highlights a number of key findings:
We hope this report will lead to further initiatives that work to understand children’s perspectives, and that considers - and truly listens to - their point of view.