Standalone NF1: guiding the transition from paediatric to adult care

This report summarizes expert and patient-representative perspectives from the meeting entitled 'Standalone NF1: guiding the transition from paediatric to adult care', held in Madrid on October 2, 2025. Its primary objective was to examine clinical, organizational and patient-related challenges during transition and identify practical measures to improve continuity of care. Discussions focused on multidisciplinary co-ordination, case management, patient autonomy and structured transition pathways. NF1 characteristics, plexiform neurofibroma burden, surgery, and the currently approved MEK inhibitors selumetinib and mirdametinib, are summarized only for clinical context; selumetinib is discussed in greater detail because it was the treatment available at that time and the one addressed during the meeting.