Young people need a voice too! The evolution of patient engagement in rheumatology research expands to ensure the voice of the younger patients is counted.
- 2014: EULAR Young PAREYoung PARE aims to improve the quality of life of young people (18 to 35 years old) with rheumatic and musculoskeletal diseases (RMDs) by raising the profile of these conditions, and by creating a network of individuals who work in European countries on behalf of young people with RMDs.
eular.org/pare_young_pare was established as the first youth committee (ages 18-35) established within an international umbrella organization, with a remit for embedding the youth perspective into EULAR’s activities, as well as in shaping clinical and research activities of relevance to young people. The founding of Young PARE was based on a collaborative and co-produced youth research project, funded by EULAR, in collaboration with young people, adult patients, health professionals and researchers in rheumatology across Europe.
- 2016: Your RheumYour Rheum is a group of people in the UK aged 11-24 years who have a diagnosed rheumatic condition. Your Rheum provides an easy way for young people to understand and get involved in rheumatology research that is relevant to them.
https://yourrheum.org/ was established to provide young people aged 11 to 24 with the opportunity to shape pediatric and adolescent rheumatology research. United Kingdom
CoPI: Advisory panels, co-production of stakeholder groups
Context: Children, Research & Development, young adults