MetabERN study on COVID-19 infection rates and symptoms in patients with inherited metabolic diseases, published in Orphanet Journal of Rare Diseases.
New COVID-19 publication: infection rates and symptoms in IMD patients Read More »
The #ERNcare4UA website helps health professionals find diagnosis, treatment, and support for Ukrainian patients with rare diseases across Europe.
Read the comment paper “Newborn screening as a fully integrated system to stimulate equity in neonatal screening in Europe” published at the Lancet Regional Health – Europe. Citation: Scarpa M, Bonham JR, Dionisi-Vici C, Prevot J, Pergent M, Meyts I, Mahlaoui N, Schielen PCJI. Newborn screening as a fully integrated system to stimulate equity in
Newborn screening – read the new publication Read More »
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 »
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.
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 »
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 »
Young rare disease patients (12-18) can apply for an EJP RD training on research and advocacy. Applications close on 30 October 2021.
MetabERN’s new website offers improved navigation, patient resources, and updated content for the rare metabolic disease community.
The redesigned MetabERN website is online! Read More »
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