The GrowDMD research team presented their international study at RARE2023, the 5th International Conference on Rare Diseases. Sebastian Friedrich from University Hospital Freiburg represented the collaborative team spanning Germany, Italy, and Canada at this premier gathering of rare disease researchers, clinicians, and patient advocates.
Sharing Transition Research with the Rare Disease Community
RARE2023 provided the perfect platform for the GrowDMD team to showcase their work on healthcare transition for youth with Duchenne muscular dystrophy. The conference brings together the global rare disease community to share research advances and discuss challenges affecting the 300 million people worldwide living with rare conditions.
The team’s poster outlined their patient-centered approach to understanding transition experiences across three countries, emphasizing how patients, families, and healthcare providers work together as research partners. With new DMD therapies extending life expectancy, their work addresses a critical gap in international care guidelines for the transition from pediatric to adult healthcare systems.
This presentation at RARE2023 highlighted the team’s commitment to developing evidence-based recommendations that can serve as a model not only for DMD but for other rare diseases facing similar transition challenges.
