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Tag: Data Collection and Sharing

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.
ERDERA and european genomic data infrastructure

Strategic collaboration between GDI and ERDERA

ERDERA and the European Genomic Data Infrastructure have signed a Memorandum of Understanding to strengthen collaboration on secure cross-border access to genomic, clinical and other health-related data, supporting rare disease research and the development of personalised medicine in Europe.
pexels-karolina-grabowska-4977472-min

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.
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 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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