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Over the last year, children, young people and families have been thinking about rare diseases and what matters to them. To mark Rare Disease Day 2022, the RCPCH Engagement Committee has pulled together views and thoughts in this letter.

We met with children and young people at community groups, schools and hospitals across the UK. They told us, "they are lifesavers" and that the NHS "helps people when they need it most". They also advised that "NHS staff have someone to look after them too". Take a look and share our 90-second vide...