Embedding Research and Innovation as Standard of Care in Rare Diseases
Research as Care: Why Rare Diseases Matter for Europe’s Future will take place on 13 November 2026 in Dublin as an event associated with Ireland’s Presidency of the Council of the European Union.
Organised by Rare Diseases Ireland and EURORDIS–Rare Diseases Europe, the event will examine how research and innovation can be embedded as part of the standard of care for rare diseases. It is being held in collaboration with Debra Ireland, the Irish Platform for Patient Organisations, Science and Industry (IPPOSI), the Neurological Alliance of Ireland (NAI), and the Nicolaides-Baraitser Syndrome (NCBRS) Worldwide Foundation.
Across three sessions, the programme will address the Biotech Act, research and innovation as standard of care, and the call for a European Action Plan on Rare Diseases. It will consider how patient partnership can make research more relevant and how rare disease research and innovation can contribute to health outcomes and Europe’s life sciences ecosystem.
The event takes place during Ireland’s 2026 Presidency of the Council of the European Union and within an active EU legislative period covering the Biotech Act, medical device and in vitro diagnostic regulation simplification, the Critical Medicines Act and the EU pharmaceutical package.