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Jan
02
2024

ERDERA | The European Rare Diseases Research Alliance

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To leave no one behind, over 170 organisations championed by the European Union and members states are working hand in hand to make Europe a world leader in rare diseases research and innovation. The European Rare Disease Research Alliance (ERDERA) takes over EJPRD to deliver concrete health benefits to rare disease patients in the next decade by advancing prevention, diagnosis and treatment research.

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Insights from the ERDERA consultancy service survey

Preliminary results point interest across the rare disease research community, while highlighting underrepresentation of some countries and stakeholders
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“Patients are the glue that keeps all other stakeholders together—without them, the system simply does not exist”

ERDERA interviews Bojana Mirosavljevic, scientist and founder of the Život/Life association in Serbia; and one of the country’s leading voices rare disease patient advocacy.
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From Hyderabad to Gdansk: collaborative diagnostic efforts that bridge research and clinical practice to shorten patients’ path to answers

ERDERA joins the Wilhelm Foundation and the Gdansk Medical University and Clinical Centre to strengthen phenotype‑led diagnosis for people living with undiagnosed conditions
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Countries step up joint approaches to rare disease research at first in person ERDERA National Alignment Board meeting

Taking place at a pivotal moment – with the European Rare Disease Plan expected to move forward significantly during 2026 – the meetings brought together National Mirror Group (NMG) representatives from Europe and beyond, alongside European Commission stakeholders, IRDiRC and international partners.

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