The Royal College of Paediatrics and Child Health (RCPCH) works with children and young people/adults aged 13-25 all over the UK to improve health services. Rare Disease Day aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
As part of Rare Disease Day 2021, RCPCH &Us together with The British Paediatric Surveillance Unit (BPSU), are launching a survey for young people aged 13-25, who have a rare disease and live in the UK.
We want your help to answer a few quick questions. These will help us, the NHS and other partners to help make the best services possible for children, young people and young adults who have a rare disease. We will use your answers to form the start of a new project with young people aged 13-25 to plan an event for other young people and professionals about living with a rare disease.