ECRD 2026: Rare diseases in a changing & competitive Europe
From 3-4 June 2026, the 13th edition of the European Conference on Rare Diseases and Orphan Products (ECRD 2026) was held in Prague and online. Organised by EURORDIS and co-organised by Orphanet, ECRD is the largest patient-led rare disease policy-shaping event in Europe. Held once every two years, it is a landmark event which brings together stakeholders from all parts of the rare disease community to network and exchange insights on how best to address the unmet needs of people living with a rare disease in Europe.
This year, ECRD was organised around the theme “Rare Diseases in a Changing and Competitive Europe,” and brought together more than 700 participants to discuss the need for a coordinated European response to the challenges faced by the rare disease community, as well as strategies for translating growing political momentum into real, concrete policy action.
Avril Daly, President of EURORDIS, and Jean Saslawsky, CEO of EURORDIS, welcome participants during opening plenary (via EURORDIS)
Over the course of the conference, a number of intensive and innovative discussions were held during key sessions. Through expert panellists and audience participation, each of these uncovered important insights on critical issues to the rare disease community. Topics ranged from early detection and newborn screening, to improving access to highly specialised care, to the co-creation of solutions for mental health challenges, and more.
At the opening and closing plenary sessions, attendees also had the chance to hear from a number of impressive speakers active in the rare disease community and the European policy space. On day 1, Adam Vojtěch, Minister of Health of the Czech Republic, spoke about the continuing need for a comprehensive European Action Plan on Rare Diseases, reminding participants of the 2009 Council Recommendation and the 2022 Prague Call to Action. During the closing session, a panel of MEPs made clear the political consensus in the European Parliament – that Europe must move from debate to binding, funded and accountable action.
These two days of intense discussion and knowledge exchange built on the work of a multi-stakeholder Core Group and a European Regional Task Force to develop a European Blueprint for Rare Diseases. The draft Blueprint was presented and refined ahead of ECRD 2026, during a workshop held on 2 June. This document, to be published in September 2026, will provide the shared vision and concrete recommendations needed to guide European and national action, to ensure that the growing political momentum in the field of rare diseases becomes a reality.
Participants explore the poster showcase (via EURORDIS)
ECRD 2026 also featured online and in-person poster showcases, displaying posters which explored a vast, multidisciplinary range of topics. Posters included in the online showcase are still available for viewing through the ECRD website. The top-scoring poster authors were invited to present their work during one of the conference’s poster pitch sessions, and a number of poster abstracts have also been selected for publication in an upcoming supplement of the Orphanet Journal of Rare Diseases. To explore this year’s posters, learn more about the key session discussions, and read about the upcoming European Blueprint for Rare Diseases, follow the links below.
