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Your Tag: 2026

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European Commission opens call for evidence on future Joint Undertakings

Feedback is open until 14 July 2026, giving stakeholders an early opportunity to comment during the preparation of a likely legislative proposal for a Council regulation.
uropean Human Genetics Conference (ESHG) 2026

At ESHG 2026 in Gothenburg, ERDERA’s diagnostics work reviewed early progress and the next phase ahead

At the European Human Genetics Conference 2026 in Gothenburg, ERDERA’s Diagnostic Research Workstream reviewed progress, highlighted early results and used a major European genetics meeting to examine how advances in data sharing and genomic analysis may strengthen rare disease diagnosis across countries.
WODC Boston 2026

At World Orphan Drug Congress USA, ERDERA highlights how connected clinical research networks can make rare disease trials more feasible

Boston, 9–11 June 2026: ERDERA's Scientific Coordinator joined the World Orphan Drug Congress USA to set out how stronger clinical research networks can make rare disease trials more feasible across sites and borders.
ECRD 2026

ECRD 2026 in Prague strengthens the push for a coordinated EU Action Plan on rare diseases

On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.
ERDERA Open Academy 2026

Open Academy x ERDERA Schools in Barcelona strengthen practical links between patient advocacy and rare disease research

The 2026 Open Academy x ERDERA Schools in Barcelona brought patient advocates and early-career researchers together for practical training on medicines development, translational research and meaningful participation in rare disease research.
Open Academy

Open Academy x ERDERA Schools return to Barcelona to strengthen rare disease research participation

From 25–28 May in Barcelona, the EURORDIS-led Open Academy x ERDERA Schools will bring patient advocates and early-career researchers together for four days of rare disease training, exchange and peer learning.
Copia de ERDERA training and announcements template

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

A new online learning series for ERN professionals, clinicians, researchers, and stakeholders.
BMC Medical Ethics

Ethics and regulatory guidance to address the challenges encountered in research on rare diseases in a multinational dimension: the experience of a European funded programme

This BMC Medical Ethics article examines ethics and regulatory guidance across EJP RD-funded rare disease research projects.
Female scientist in protective gear using lab equipment for research.. Photo by ima Miroshnichenko via Pexels (CC0)

Biotech Act II: European Commission opens Call for Evidence on industrial biotechnology and biomanufacturing

The European Commission has opened a Call for Evidence on the upcoming Biotech Act II — with feedback open until 10 June 2026, inviting stakeholders to submit input that will help shape the initiative before a legislative proposal is prepared.
Copia de ERDERA training and announcements template

Webinar: The ERDERA Diagnostic Research Workstream – An overview

May 28 @ 1:00 pm - 2:00 pm
The session will introduce the workstream’s activities in data sharing, systematic diagnostic reanalysis, advanced diagnostic pipelines, and genomic and multi-omics innovation.
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