|Date & Time||9 November 2021 at 14:00-18:00 CET|
EJPRD, Alexion, EURORDIS, EUCOPE, and EuropaBio are co-organising a conference to discuss the rare disease ecosystem in its whole spectrum of policies and stakeholders at national, EU and international level. A broad panel of stakeholders will give its vision on the topic from various perspectives. As the most affected by rare diseases, patients and their families will have a central role, presenting their challenges, needs and requests to enable the ecosystem. Representatives of research and academia, as well as physicians and carers, will share challenges arising in their daily activities. Industry will provide its views on how to put into full force its capacity, to benefit rare disease patients. Finally, policymakers will present how EU Institutions are working to enable the rare disease ecosystem and inform about expected next steps and initiatives to come.
Anton Ussi, EATRIS Operations & Financial Director will be among the panellists talking about translational research and alliance building.