The 11th European Conference on Rare Diseases and Orphan Products (ECRD) took place fully online from 27 June to 1 July 2022. Members of the DEBRA Ireland Research team were delighted to attend.

The ECRD is recognised globally as the largest, patient-led rare disease policy event. Its purpose is forming the groundwork to shape goal-driven rare disease policies and allow for important and innovative discussions on a national and an international level to take place. The conference is an opportunity to network and exchange invaluable knowledge with over 1500 stakeholders in the rare disease community – patient advocates, policy makers, researchers, clinicians, healthcare professionals, academics, regulators and Member State representatives.

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On the first day of ECRD 2022, the Opening Plenary Session set the scene for this year’s online conference and was followed by an orientation and networking session along with several parallel Thought Leader sessions. The following three days were dedicated to discussions on how to reach the three visionary goals for people living with a rare disease, inspired by the Rare 2030 project and implemented through a new policy framework. These goals include good health and well-being, reduced inequalities & industry, innovation and infrastructure. The Closing Plenary on Day 5 reminded the audience that rare diseases must be addressed across all of Europe (beyond the EU) and on a global scale. This closing session also left participants with a clear call to action in the immediate, medium and long-term future.

The event really was a great success in discussing how to reach three visionary goals for people living with a rare disease. “Together, we will achieve our commitment to leave no one behind by 2030 so that every EU citizen facing rare diseases can be guaranteed the same opportunities wherever they live in the EU.” – Olivier Véran, Former Minister for Solidarity and Health, France.