Myotonic Dystrophy is amongst the most variable neuromuscular condition ranging from congenital onset to late-adult onset. It is a multiorgan disease affecting well beyond skeletal muscle, the heart, respiratory muscles, the eye, the gastrointestinal system and the CNS being variably dysfunctional in the disease, depending on the age, the type of onset and the duration of disease. Natural history studies are guiding clinical care towards the best outcomes to develop and apply in monitoring the disease and designing clinical trials. While this is in a more advanced phase in adults with DM1, there are more challenges in the pediatric onset phenotypes. The transition from pediatric to adult care in Myotonic Dystrophy Type 1 (DM1) represents a pivotal phase for individuals diagnosed with congenital or juvenile-onset forms of the disease. This stage, like the adult phenotype stage, demands a multidisciplinary, integrated, and anticipatory approach designed to meet the evolving clinical complexity and life circumstances of young adults.

This Peer-to-Peer educational program is built to foster clinical collaboration, facilitate the exchange of best practices, and provide practical, case-based insights into the management of DM1. Through immersive sessions with experienced care teams, the program explores strategies for managing the multisystemic manifestations of DM1—including neuromuscular, cardiac, respiratory, gastrointestinal, cognitive, and endocrine involvement. The agenda is structured around: individualized and proactive care pathways; the roles and coordination of multidisciplinary teams, and future-forward models for long-term disease monitoring and functional support. Particular emphasis is placed on the early recognition of systemic complications and the optimization of care before irreversible decline occurs—a principle that becomes essential in the era of emerging therapeutic approaches. Ensuring excellence in Standards of Care (SoC) is key not only to improving current outcomes, but also to enhancing the potential benefits of future pharmacological interventions in DM1.