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RCPCH &Us Rare Disease Survey.

Are you aged 13-25 years?

The Royal College of Paediatrics and Child Health (RCPCH) believe that children and young people are at the heart of everything they do. They want to improve the healthcare of children and young people across the UK.

RCPCH &Us and British Paediatric Surveillance Unit’s (BPSU) are supporting a project about rare disease with young people aged 13-25 and who live in the UK. They are starting this project by promoting a short survey to hear the voices of young people who have a rare disease and live in the UK. In the survey link there is information about how young people can get in touch with RCPCH &Us at to be involved in a steering group to support a short project to improve the care of children and young people with a rare disease.

Please take the survey

The closing date is 6th April 2021

 Rare disease survey link