ERDERA 101: Europe’s New Chapter in Rare Disease Research October 2024

https://www.eurordis.org/erdera-101-explainer/ Europe is home to over 30 million people with a rare disease, yet healthcare systems struggle to meet their needs. Of the 7,000 known rare conditions, 94% lack dedicated treatments, and a third of patients have never received personalised therapy. Only 18% of rare disease patients have contributed to treatment research, and just 15% to quality-of-life studies.