On 2–3 May 2025, Dr Silvia Torretta from Fondazione Gianni Benzi participated as a speaker in the Training Event on Paediatric Clinical Research for Young People Living with a Rare Disease, organised by the TEDDY Network within the framework of the ERDERA Project. The training was aimed at raising awareness among young patient advocates about their rights in decisions about their health, as well as at providing them with adequate knowledge to navigate the complex landscape of rare diseases. 

Dr Torretta contributed to two sessions titled Patients’ and Children’s Rights and Patient Engagement in Clinical Trials, addressing key topics such as: 

• Legal and ethical considerations in paediatric research: explaining the need for clear rules and ethical requirements to conduct clinical research fairly and safely, especially when involving young people.
  • Consent/assent, clinical study protocol, and lay summaries: a focus on consent and assent procedures, their importance in protecting patients’ rights, as well as an overview of the key steps in the conduct of clinical trials and the essential supporting documents.

The event saw the enthusiastic participation of youth advocates from various international organisations, including KIDS Bari and KIDS Umbria (Italy), KIDS Albania, RAIN Ireland, eyeYPAG (UK), ANDO Portugal, and KIDS Rare Hellas (Greece).
Their involvement highlighted the critical importance of including the voices of young people in shaping ethical and inclusive clinical research.