EURORDIS welcomes provisional agreement on the European Health Data Space
15 March 2024, Brussels – The Council of the EU and the European Parliament have reached a provisional agreement on the regulation to establish the European Health Data Space (EHDS).
The EHDS is aimed at facilitating the sharing and access of health data across EU Member States to improve healthcare outcomes, research, and policymaking, while safeguarding data security and privacy.
Responding to the provisional agreement, Jelena Malinina, Data Director at EURORDIS-Rare Diseases Europe, said:
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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32