From March 5 to 7, 2025, Brussels hosted the RE(ACT) Congress & IRDiRC Conferencean event dedicated to research into rare and orphan diseases. Organized by theIRDiRC (International Rare Diseases Research Consortium) in collaboration with the BLACKSWAN Foundation andERDERA (European Rare Diseases Research Alliance), the congress brought together researchers, clinicians, policy-makers and patient associations to discuss scientific advances and the challenges facing the sector.
Topics covered
Presentations and discussions covered several key topics, including:
🔬 Diagnosis of rare diseases: new approaches combining genomic sequencing and artificial intelligence.
📊 Health data exploitation: how to structure and share information to improve research.
🧬 Advanced therapies (ATMPs): advances in gene and cell therapies.
💊 Drug repositioning: using existing treatments for new indications.
💰 Funding models: strategies to support rare disease research.
👨👩👧👦 The impact of rare diseases on patients and families: care and quality of life.
Perspectives and collaborations
The event highlighted the need for international cooperation to accelerate diagnosis and treatment development. The common goal remains to improve access to care and therapies for those affected by these diseases.
Next appointment
The RE(ACT) Congress & IRDiRC Conference will return in 2027 to continue these exchanges and monitor the progress made.