Tag: Real-World Data (RWD)

Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.
New EMA ICH M14 guidelines sets common international standards for non‑interventional real‑world data studies to strengthen medicine safety assessment.
Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.
Sharing patient‑centred methods, early diagnostics, and data‑driven trial innovation to accelerate rare disease research across Europe.
EMA invites feedback to strengthen how the EU generates and uses evidence that reflects what matters to patients, including in rare diseases
Analysis of registry data offers critical insights into the progression of seizures and speech development in patients with Dravet syndrome.