In July, the Joint Action on Integrating ERNs into National Health Systems (JARDIN) launched an important initiative to standardise care pathways for rare diseases (RDs) across Europe. Under Task 6.2, this initiative established a cross-country Working Group (WG) to develop model care pathways to ensure a more consistent and efficient approach to diagnosing and treating rare diseases across European health systems.
ERN eUROGEN, the European Reference Network for Rare Uro-Recto-Genital Diseases and Complex Conditions, has been invited to contribute to this effort. As part of this initiative, the network will lead the development of a care pathway for anorectal malformations (ARMs) and collaborate with Endo-ERN, another European Reference Network, on a care pathway for differences of sex development (DSD) and congenital adrenal hyperplasia (CAH).
These collaborations are crucial steps toward improving the quality of care for patients with these complex conditions, which often require highly specialized, multidisciplinary management. By working with EURORDIS and European Patient Advocacy Group (ePAG) representatives, the Task 6.2 Working Group aims to ensure that the voices of patients and advocacy groups are integrated into the development of these care pathways.
Through this work, ERN eUROGEN will help shape a process and toolkit that healthcare professionals can use to improve care delivery, reduce variability in treatment approaches, and promote best practices for rare diseases across the continent.
This initiative aligns with the broader goals of European Reference Networks to enhance cross-border cooperation and ensure that patients with rare diseases receive the best possible care, no matter where they live in Europe.
