Tag: EURORDIS–Rare Diseases Europe

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.
EURORDIS champions patient-centred innovation in rare disease research
Three days in Brussels help advance the European Declaration on Rare and Complex Diseases
The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led policy-shaping event on rare diseases in Europe.
Using Morocco as a case study, this paper shows how underrepresented countries contribute unique genetic insights to rare disease research and why their integration into initiatives like ERDREA is essential for both scientific progress and equity.
A global movement, coordinated by EURORDIS in partnership with 72 national alliances, amplifying representation and accelerate fair access to diagnosis, care and research.
A new edition of “Navigating Rare Disease Research: Data, Ethics and AI in Europe” will follow suit