MetabERN members publish groundbreaking research on inflammation and immunomodulatory treatment for Mucopolysaccharidoses patients.
Inflammation & Immunomodulatory Drugs in MPS – New pubblication Read More »
Recordati Rare Diseases announces two specialized training courses for healthcare professionals on inherited metabolic disease management.
Recordati Rare Diseases – Training courses on inherited metabolic diseases Read More »
New Economist Impact report examines challenges and solutions for rare pediatric neurological diseases treatment in European healthcare.
A GLI webinar explored challenges in diagnosing and treating rare paediatric liver diseases, their impact on families, and recent scientific advances.
Rare Liver Diseases in Europe – Recent Webinar by GLI Read More »
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 neonatal
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 »
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.
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