Late diagnosis of rare kidney diseases is exacting a devastating toll across Europe-delaying treatment, forcing lifelong dialysis, and fracturing families.
Lydia Abad-Franch, Chief Medical Officer at Sobi, revealed that one-third of patients wait over three years for diagnosis; some wait up to five. By then, dialysis or transplantation often becomes inevitable.
"Patients spend three days a week, four hours per session at clinics," Abad-Franch said. "It destroys work, education, and mental health."
Daniel Gallego, President of the European Kidney Patients Federation, described his own diagnosis at age 20 as a life-shattering moment. "The best dialysis is to not need dialysis," he said.
Professor Michel Jadoul highlighted a simple, underused tool: annual urine testing. Yet only half of diabetic patients receive it, despite clear guidelines.
Experts urge EU-wide Cardiorenal Metabolic (CRM) screenings-combining kidney, diabetes, and cardiovascular tests-modeled after Japan’s successful system. MEP Nikos Papandreou noted political inertia, but stressed long-term savings and broader medical gains.
Sobi and patient advocates argue: the science exists. The gap is not knowledge-but alignment.