This meeting underscored the essential role of cooperation between hospital teams, community healthcare providers, and local stakeholders in supporting people living with a rare disease and their loved ones.
Participants addressed challenges in managing myasthenia gravis and the coordination between patients, community healthcare professionals, and hospital teams. They also explored prospects offered by exoskeletons, intensive rehabilitation, research, and the France Maladies Rares (FraMaRa) application.
The afternoon sessions focused on genetics and genomic medicine, platform projects aimed at reinforcing city-hospital links, and the coordination of chronic pain management in Île-de-France. The role of territorial professional health communities (CPTS) in building coordinated care pathways was also presented, emphasizing close collaboration among healthcare system actors.
This 11th annual meeting reiterated that territorial coordination is a key lever for building more coherent, accessible, and patient-needs-adapted support. The platform thanked all speakers and participants for their presentations and the richness of the discussions, as well as Maladies Rares Info Services and FrBioNet for their presence.
