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
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.
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 »
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