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GENOME INFORM
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Rare disease developments with an international perspective.
Original English reporting and editorial summaries based on primary sources. The publication date and the date or period of the underlying source are identified separately.
International cooperationICORDGENOME INFORM · ENGLISH EDITION
ICORD rare disease school begins on 2 November
An online English-language programme connects rare disease education, public health and international collaboration.
Read the report →Global health policyWHOGENOME INFORM · ENGLISH EDITION
WHO outlines the route to a global rare disease action plan
The published roadmap places consultation before a draft plan and consideration by the World Health Assembly in 2028.
Read the report →Medicines and regulationEMAGENOME INFORM · ENGLISH EDITION
EMA’s 2025 review records 16 confirmed orphan designations
The annual review separates recommendations for authorisation from confirmation of orphan status.
Read the report →