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Tag: Data Collection and Sharing

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Two EJP RD MOOCs open facilitation windows for the rare disease community

Two expert‑led facilitation windows linked to EJPRD‑developed MOOCs, give learners the opportunity to engage directly with specialists in health data governance and translational research for rare diseases.
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.
Radka Kaneva and Petia Stratieva, Sofia, March 2026

“National Mirror Groups are essentially a bridge — bringing European developments, standards and opportunities to clinicians and researchers.”

ERDERA interviews Prof. Radka Kaneva and Dr Petia Stratieva, two leading members of Bulgaria’s National Mirror Group (NMG), to explore how the country is working to align its rare disease ecosystem with European developments.
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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 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.
Rare Disease Day 2026 visual representation

One year of ERDERA: the European alliance built to accelerate rare disease research reports first results

28 February, across Europe and beyond: one year into delivery, ERDERA is advancing towards shorten diagnostic journeys and improved therapies for people living with a rare disease.
Scientific paper

Human genomics technologies in clinical studies – the research landscape: report on the 1990–2024 period

Published on 14 December, this WHO technical document maps global trends in registered clinical studies using human genomic technologies from 1990 to 2024, including patterns of inclusion and equity.
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New WHO report highlights gaps in human genomics research

Greater efforts are needed to invest in infrastructure, foster inclusive study designs and align research agendas.
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Europe’s Genomic Data Infrastructure showcases cross‑project value at the 2026 Stakeholder Forum

Experts from Europe’s major health data initiatives met virtually to discuss how the European Genomic Data Infrastructure is supporting partner projects, and why sustained collaboration is central to Europe’s wider health and research data ambitions.
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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