MetabERN centers in Poland, Hungary, Romania, Slovakia, and Lithuania are ready to provide medical care to Ukrainian patients.
In solidarity with Ukraine and Ukrainian rare metabolic disease patients Read More »
A workshop on endocrine cancer for ERN specialists will take place on 4 May 2022 in Gliwice, Poland. Free participation and travel support.
EJP RD WORKSHOP – Endocrine cancer: A challenge in adults and children Read More »
An online meeting on DCDEs curation for clinicians and medical professionals will take place on 9 December 2021 at 16:00 CET.
EJP RD & ERICA meeting – Domain specific Common Data Elements (DCDEs) Curation Read More »
The MetabERN Coordination Office met in Brussels to discuss achievements, future priorities, and projects for rare metabolic disease care.
MetabERN Coordination Office meeting in Brussels Read More »
A Slovenian Presidency event explored newborn screening equity in the EU. Watch expert presentations now on YouTube.
An Italian online event on 30 Nov 2021 will explore the role of ERNs in rare disease care, research, and patient involvement.
“ERNs towards integration” – Online Italian event for the ERN community Read More »
The 11th SIMMESN Congress will be held in Bologna from 2 to 4 Dec 2021, focusing on metabolic diseases and newborn screening.
A Friends of Europe report explores how the European Health Data Space can support rare disease patients through data sharing and digitalisation.
Experts and patient representatives discussed newborn screening registries, case definitions, and a roadmap for an equitable NBS system.
Metabern & ISNS meeting – Moving towards NBS as a system: Setting out the roadmap Read More »
A webinar on 9 Nov will explore drug development and collaboration with Rare Disease networks to improve patient care.
Drug development and how best to work with specialised Rare Disease networks – webinar Read More »
c4c launches a European campaign to raise awareness of paediatric clinical trials. Take the survey and share your opinion.
c4c – paediatric clinical trials awareness campaign Read More »
Prof. Scarpa discussed COVID-19 vaccines and ERN recommendations for Lysosomal patients at the AIAF IN CONNESSIONE meeting.
Prof. Maurizio Scarpa in the AIAF IN CONNESSIONE meeting Read More »
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