From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.
Young advocates met in Paris from 23–25 April 2026 for the second ERDERA Training for Young Advocates for Rare Diseases, focused on advocacy, clinical research, patient rights and partnership in paediatric rare disease research.
A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.
Drawing on Europe-wide patient and carer surveys, ERDERA highlights how gender can shape diagnostic delays, care burden and the evidence base for rare-disease research.
On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.
Annual awards celebrating outstanding achievements by people living with a rare disease and those making a difference across the rare disease community (patient advocacy, policy, science, care, industry and beyond).
The training responds to the growing need for patient advocates to understand data management, ethical considerations and the role of AI in rare disease research.
