We explore how we can strengthen Nordic cooperation through better data sharing, improved screening programs, and coordinated policy initiatives. With the European Health Data Space and new Nordic collaborations, such as the Nordic University Hospital Alliance (NUHA), emerging, we have a unique opportunity to ensure rare disease patients receive the best possible care across borders.

By bringing together decision-makers, clinicians, researchers, and patient organizations we aim to shed light on some of the barriers and challenges as well as where we are advancing in the Nordics and Europe. We will highlight openings and practices that can inspire us across countries and identify steps for strengthening Nordic partnerships in rare disease care.

The participants are:

• Malene Fischer, Deputy CEO, Rigshospitalet (Denmark)
• Jørgen Schøler Kristensen, Former Chair of the Danish Medicines Council (Denmark)
• Iiro Toikka, Development Manager, the Finnish Institute for Health and Welfare (THL) (Finland)
• Tone Trøen, Political Leader of the Health and Care Services Committee, Nordic Council (Norway)
• Stein Are Aksnes, Leader of the National Advisory Unit for Rare Disorders (Norway)
• Olve Moldestad, Head of the Department of Newborn Screening, Oslo University Hospital (Norway)
• Oskar Ahlberg, Vice Chair, Rare Disease Sweden (Sweden)
• Vesa Jormanainen, Senior Ministerial Adviser, Ministry of Social Affairs and Health (Finland)
• Allan Lund, Professor of Paediatrics, Head of Centre of Rare Diseases, Rigshospitalet (Denmark)