The International Rare Diseases Research Consortium (IRDiRC) Working Group on the Engagement of Young People Living with Rare Diseases in Therapy Development has published a perspective article in Frontiers in Pediatrics entitled “Engaging Children, Adolescents and Young Adults Living with Rare Diseases as Research Partners: Practical Considerations for Meaningful Involvement“.
The publication provides practical, expert-informed guidance to support the meaningful involvement of young people living with rare diseases throughout the research and development process. The paper was developed by a international multidisciplinary team, including young people with lived experience of RDs. By providing a structured framework for engaging young people as research partners, the publication aims to strengthen the relevance, quality and impact of rare disease research.
Read the full paper, available open access: https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1886270/full