At the Annual Meeting of the German Society for Neuropediatrics (GNP) in October 2024 in Stuttgart, Prof. Dr. Thorsten Langer from the University Medical Center Freiburg presented key findings from the GrowDMD project.
The GNP Annual Meeting is one of the most important conferences for professionals in pediatric neurology in German-speaking countries. It brings together hundreds of clinicians, researchers, and allied health professionals to exchange knowledge and foster innovation in the diagnosis and treatment of neurological disorders in children and adolescents.
Prof. Langer’s presentation focused on the transitional challenges faced by young people living with Duchenne Muscular Dystrophy (DMD) as they move from pediatric to adult healthcare services. The GrowDMD project, conducted in collaboration with teams from Germany, Canada, and Italy, uses qualitative interviews and surveys to explore the experiences of patients, families, and healthcare providers.
Preliminary findings reveal that while clinical aspects of the transition are important, many young people and their families emphasize the need for clear structures, early support, and emotional continuity during this vulnerable phase. Healthcare providers, by contrast, often face limitations due to informal and inconsistent institutional frameworks.
By integrating perspectives from all stakeholders, GrowDMD aims to develop practical recommendations for improving transitional care—not only for DMD but also for other rare chronic pediatric-onset conditions.
