PolicyPUBMEDApr 1
Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.
A European network for rare connective tissue diseases has created a new model where patients are treated as equal partners in research and care decisions. Instead of doctors alone deciding what to study and how to treat patients, this network includes patients in every step—from identifying problems to writing research papers together. This approach helps address long diagnostic delays and gaps in care that patients with these rare diseases often face.
WHY IT MATTERSPatients with rare connective tissue diseases can now directly influence research priorities and treatment approaches through structured partnership roles, rather than having decisions made without their input.