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Category: ERDERA

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Advancing Rare Disease Diagnostics: The ERDERA Diagnostic Research Workstream Webinar Series

A new online learning series for ERN professionals, clinicians, researchers, and stakeholders.
ERDERA First Policy Think Tank meeting

ERDERA Policy Think Tank meets in Paris to advance data and registry policy for rare diseases

Bringing together policy makers, researchers and data experts to align on how registry data can better support rare disease research and evidence‑based policy across Europe.
Insights frInsights from the ERDERA consultancy service surveyom the ERDERA consultancy service survey

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
Bojana Mirosavljevic

“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.
Gdańsk - Medical University of Gdańsk

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
NMGs Sofia

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.
Bojana Mirosavljevic

ERDERA interview with Bojana Mirosavljevic, rare disease patient advocate from Serbia and founder and president of Život/Life.

Captura de pantalla 2026-04-08 142004

Advancement of Treatments for Rare Diseases

The two-day event will focus on translating research and policy initiatives into tangible benefits for Rare Disease patients through better prevention, diagnosis, and treatment.
European Parliament

European Parliament draft report urges a binding EU rare disease action framework

A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.
Woman helping out a person with a disease

Women’s Day highlights widening gender inequalities in rare diseases

Drawing on Europe-wide patient and carer surveys, ERDERA highlights how gender can shape diagnostic delays, care burden and the evidence base for rare-disease research.
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