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EURORDIS-Rare Diseases Europe

The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future. With over 1000 participants, the Conference is an unrivalled opportunity to network and exchange invaluable insights within the rare disease community. Through collaborative efforts, these discussions culminate in clear policy recommendations that can influence both EU and national policies.

Email.: anne.lheveder@eurordis.org

Rare Disease, mental health, national and European plans, diagnosis, research, ERN, highly specialised care, treatments

Système de santé, gestion hospitalière,    Gestion des données cliniques, télésanté