Transitioning adolescents with rare forms of diabetes to adult care: challenges and perspectives

Background: Adolescents and young adults (AYA) with rare forms of diabetes – including Wolfram syndrome (WS), Alström syndrome (AS), Bardet-Biedl syndrome (BBS), and maturity-onset diabetes of the young (MODY) – face unique challenges during the transition to adult care. These challenges are intensified by multisystem endocrine involvement, neurocognitive and sensory impairments, and limited adult provider expertise. Objective: This narrative review describes transition-specific barriers in rare diabetes syndromes, explores current initiatives, and proposes recommendations for care models and health system reform. Key issues: Syndromic forms of diabetes often involve complex endocrine dysfunctions beyond glycemic control, including diabetes insipidus, hypogonadism, and thyroid or pituitary anomalies. Transitions are further hindered by diagnostic uncertainty, fragmented care structures, and insufficient interdisciplinary coordination. Pediatric care is often proactive and family-centered, while adult services are fragmented and reactive. Dedicated multidisciplinary transition services remain scarce. Recommendations: Best practices include early transition planning, syndrome-specific education, the use of patient-reported outcome measures (PROMs), and integration of digital tools. Structured collaboration between pediatric and adult providers – including virtual models – should be supported. Patient-centered approaches must address both medical and psychosocial readiness, with tailored communication for those with sensory or cognitive impairments. Health system and policy needs: Sustainable transition programs require dedicated funding, institutional prioritization, and policy inclusion in national and European rare disease frameworks. Without adequate financial support, disparities in care continuity and outcomes are likely to persist. Conclusion: A coordinated, multidisciplinary, and resourced transition model is essential to safeguard health, autonomy, and long-term outcomes in AYA with rare diabetes syndromes.