CYPRUS 2026 EU CONFERENCE: ADVANCEMENT OF TREATMENTS FOR RARE DISEASES

Objective

Rare Diseases (RDs), often called orphan diseases, are a diverse group of disorders that collectively affect a significant number, approximately 30 million people in EU. The majority of rare diseases have a genetic origin and encompass a wide range of pathological conditions, many of which are chronic, debilitating and may shorten lifespan. Due to the rarity, complexity and the limited available knowledge, rare diseases pose significant challenges in terms of diagnosis, treatment and access to specialised care. Efforts to address rare diseases involve multidisciplinary collaboration, innovative research and policy initiatives aimed at improving outcomes for affected individuals. Moreover, the socioeconomic impact of rare diseases at the individual, health care and societal levels is significant, but in countries with centralised healthcare systems, the cost is spread out given the rarity of theses diseases. The proposed high-level conference on the advancement of treatments for rare diseases (RD) within the EU, will be organised under during the Cyprus Presidency of the Council of the European Union, as one of the of the Presidency events. The conference aims to strengthen collaboration, foster innovation, and drive development in the field of rare diseases management. The conference will highlight the goal of making Europe “the global beacon for life sciences by 2030”, support concrete health benefits to rare diseases patients, through better prevention, diagnosis and treatment. This two-day event will focus on promoting excellence, innovation, collaboration and synergies on treatments for rare diseases.