EURORDIS-Rare Diseases Europe

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EURORDIS welcomes European Parliament draft report calling for a European Action Plan on Rare Diseases1 week

5 March 2026, Brussels – EURORDIS–Rare Diseases Europe welcomes the draft report presented by MEP Nicolás González Casares, Member of the European Parliament Committee on Public Health (SANT), ...

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EURORDIS supports EU Member States’ efforts to secure reintroduction of health NGOs’ operating grants 1 week

4 March 2026, Brussels – EURORDIS–Rare Diseases Europe, together with fellow members of the EU4Health Civil Society Alliance, reiterates its call for the European Commission to reinstate operating grants for health...

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Webinar: How can patient organisations comment on the Union List of Critical Medicines2 weeks

Join us for an interactive discussion on how to make your voice heard and strengthen access to essential treatments.

4 March, 15.00-16.30 CET online

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EURORDIS Black Pearl Awards 2026 reveal outstanding rare disease trailblazers, from scientists to storytellers 2 weeks

24 February 2026, Brussels – EURORDIS-Rare Diseases Europe has announced the recipients of the 15th edition of the Black Pearl Awards, celebrating outstanding individuals and organisations whose work is improving the lives of people living with rare diseases.

The ceremony took place on Tuesday 24 February at the Cardo Hote...

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