CA25161 - Collaborative Network for Rare Ocular Surface Disorders (CONCORD)

Rare ocular surface diseases (ROSD) represent an under-recognized group of conditions that place a significant burden on European patients and healthcare systems. Despite the presence of expertise across Europe, knowledge remains fragmented, limiting progress in diagnosis, treatment, and patient management. Existing rare eye disease networks focus largely on retinal disorders, leaving anterior segment ROSD underserved and poorly characterized. There is an urgent need for coordinated action to advance epidemiologic understanding, foster collaboration, and ensure equitable access to specialised care.

This COST Action aims to build a sustainable, multidisciplinary European network of clinicians, scientists, and patient organisations dedicated to ROSD. Through this collaborative framework, the Action will address critical knowledge gaps in disease prevalence, demographic and gender-related factors, and socioeconomic impact. It will promote early diagnosis, improve clinician awareness, and develop personalised treatment pathways that reflect patient diversity. Establishing a European Society for ROSD will formalize these efforts and ensure continued engagement across patient, clinical, research, and industry stakeholders.

By bridging gaps between scientists, clinicians, and patients, the Action will accelerate translation of scientific discovery into clinical benefit, foster ethical and equitable access to novel therapies, and enhance patient quality of life. Multidisciplinary collaboration—integrating ophthalmology, immunology, genetics, and engineering—will drive innovation in clinical research and epidemiology. Ultimately, this coordinated European effort will create the foundation for a lasting ROSD network that informs health policy, supports precision care, and transforms outcomes for individuals affected by rare ocular surface diseases.