Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases

During HLM Rare 2025 we launched the Declaration on the European Innovation and Care Ecosystem for Rare and Complex Diseases. This Declaration is a political and strategic commitment to fundamentally transform our ecosystem. It sets out a bold shared vision, clear strategic priorities, and a roadmap that includes, in the short term, the establishment of a Consultative Group to develop a concrete, measurable Action Plan, and in the medium to long term, accelerated progress for rare and complex diseases—through more treatments, universalised newborn screening, and advanced diagnostics. Over the three days of our event, each panel discussed, tested, and refined specific priorities and recommendations that the Declaration puts forward, so that this document becomes not just a statement of intent, but a practical guide for joint action in the years ahead.