Welcome

Welcome to the pinnacle event in rare diseases research – the RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). From March 5th to 7th, we gathered in the vibrant city of Brussels for an unparalleled exchange of knowledge and ideas.

Continuing the legacy of the esteemed IRDiRC Conference series (now in its 6th edition) and the RE(ACT) Congress series (celebrating its 8th edition), this convergence served as a beacon for scientific innovation. Our assembly comprised visionary leaders, distinguished experts, and emerging talents from diverse scientific domains, converging to unveil groundbreaking research, foster dialogue, and shape policies crucial to rare disease research.

In a testament to inclusivity and collaboration, patients and advocacy organizations dedicated to research graced our gathering, enriching discussions with invaluable firsthand experiences and perspectives.

Since its inception in 2012, the RE(ACT) Congress, pioneered by the BLACKSWAN Foundation, has catalyzed scientific collaboration and advancement in rare and orphan diseases. Meanwhile, IRDiRC, established in April 2011 under the auspices of the European Commission and the US National Institutes of Health, has been pivotal in galvanizing global cooperation among researchers, funders, and patient advocacy groups within a multinational framework.

This joint venture of the 8th RE(ACT) Congress and the 6th IRDiRC Conference, in partnership with the European Rare Diseases Research Alliance (ERDERA), Eurordis (the European Alliance of Patient Organizations), symbolizes a unified commitment to surmounting rare disease challenges through collective action and shared knowledge.

Together, we embarked on a journey of discovery, collaboration, and hope, setting new benchmarks in the relentless pursuit of solutions for people with rare diseases. Welcome to a convergence where every voice matters and every contribution propels us closer to a future where rare diseases are not barriers but conquerable frontiers.

On behalf of the Organizing Committee for the RE(ACT) Congress and IRDiRC Conference 2025: