Category: International Alignment

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.
Captura de pantalla 2026-03-10 165055

The Health Research Podcast – Ep 6: Rare Disease Research

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.
European Parliament Photograph

New European Parliament study maps options for an EU rare disease action plan

European Parliament research service assessment, published in February 2026, identifies 31 measures that could form an EU rare disease action plan, highlighting European Reference Networks and cross-border collaboration including ERDERA as drivers of EU added value.
Black Pearl Awards

EURORDIS Black Pearl Awards 2026: celebrating rare disease champions in Brussels and online

On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.
YT thumbanil ERDERA (3)

Victoria Hedley explains the role of National Mirror Groups in the rare disease research ecosystem

Pharmaceutical products

EU institutions agree next steps on reform of pharmaceutical legislation

Following the 11 December 2025 political agreement, EU institutions are moving towards formal adoption of a new Directive and Regulation that will reshape how medicines—including orphan and paediatric medicines—are developed, authorised and supplied across the European Union.
Task-Forces-IRDiRC

IRDiRC launches call for experts for four new rare disease activities

Rare disease researchers, clinicians, patient advocates and data experts are invited to help shape four new IRDiRC activities linked to the new IRDiRC Roadmap, with applications closing on 20 February 2026.
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