Background

Young people with genetic and intellectual disabilities often experience major challenges when moving from child to adult healthcare services. This transition can be fragmented, leading to gaps in care and increased stress for families. A coordinated, structured approach is essential to ensure continuity and quality of care during this vulnerable period.

Research

The ERN-ITHACA network developed evidence-based European guidelines to support this transition process. Using a structured, consensus-driven approach, the guideline draws on research evidence and patient perspectives. It emphasises person-centred care, early planning, and strong collaboration between paediatric and adult teams.

Potential Impact

These guidelines provide a unified framework to improve coordination and consistency of care across Europe. By supporting earlier planning and clearer communication, they aim to reduce care gaps and improve health outcomes. Ultimately, the guidance empowers healthcare professionals, patients, and families to achieve smoother and safer transitions to adult services.