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ERDERA launches Ethics & Regulatory Webinar Series with introductory webinar on ethics across the research continuum

ERDERA’s ethics and regulatory experts are launching a dedicated webinar series to help the rare disease research community navigate two fast-moving areas of biomedical research: Advanced Therapy Medicinal Products (ATMPs) and Artificial Intelligence.
webinar series ERDERA

Introductory webinar: Situating ethics in the research continuum

July 24 @ 3:00 pm - 4:00 pm
This webinar will present a theoretical framework for situating ethics across research activities. The framework will then be brought to life through a relevant case study discussion, giving participants a concrete reference point for the episodes ahead.
State of the art rare disease country reports ERDERA

State of the art 2026 rare disease country report: Poland

This 2026 country report outlines the policy, research, care and support landscape for rare diseases in Poland.
NMG workshop 2026

ERDERA National Mirror Groups workshop: Creating, evolving and utilising national registries to advance rare disease research

Held in Riga on 9–10 June, the workshop brought National Mirror Group experts, researchers, clinicians and policymakers together to exchange practical lessons on how national rare disease registries can better support research and alignment across countries.
Photograph of neurons - CC BY-NC-SA 2.0 by Birth Into Being via Flickr.

NCL Foundation launches €200,000 prize to connect rare and common neurodegeneration research

The NCL Foundation has opened the Rare-to-Common Neurodegeneration Impact Prize, a €200,000 research award supporting collaborative projects that connect CLN3 Batten disease research with more common neurodegenerative or age-related disorder
EU Flags

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.
ERDERA clinical trial call

Press Release | ERDERA Clinical Trial Call

ERDERA launches Clinical Trial Call 2026 to advance early‑phase clinical trials for rare diseases
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.
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