02/09/2026
🔬 Rare disease research moves forward when experience and expertise come together.
Research can deepen our understanding of rare diseases, support earlier and more accurate diagnosis, and contribute to the development of new treatments. But true progress depends on bringing patients with lived experience into the heart of the research process.
đź“Š Rare Barometer captures the realities and experiences of people living with rare diseases across areas including diagnosis, treatment and care.
🎓 Through the Open Academy, patient advocates build their knowledge of the rare disease research environment and opportunities to get involved.
🧬 The ePAG Transversal Working Group on Research and Registries develops patient advocates’ understanding of relevant ERN clinical and basic research topics.
🤝 And the EURORDIS Round Table of Companies creates a space for pharmaceutical and biotech companies to engage with the rare disease community and collaborate on research, development and access to treatments.
đź”— Discover more about our work on rare disease research: https://go.eurordis.org/rare-research-eurordis
