Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement

https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1886270/full Engaging children, adolescents and young adults living with rare diseases as research partners This recent IRDiRC article explores the importance of engaging young people living with rare diseases as research partners. Co-authored by Maria Cavaller, our former Patient Engagement and Therapeutic Development Director, the article highlights how strengthening young people's involvement in rare disease research can help ensure that different types of research are meaningful, relevant and reflective of their lived experiences.