#ERNcare4UA – A dedicated website to help health professionals find support for Ukrainian patients
The #ERNcare4UA website helps health professionals find diagnosis, treatment, and support for Ukrainian patients with rare diseases across Europe.
Newborn screening – read the new publication
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 »
In solidarity with Ukraine and Ukrainian rare metabolic disease patients
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 »
EJP RD WORKSHOP – Endocrine cancer: A challenge in adults and children
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 »
EJP RD & ERICA meeting – Domain specific Common Data Elements (DCDEs) Curation
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 »
MetabERN Coordination Office meeting in Brussels
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 »
Accompanying event of the Slovenian Presidency on Newborn Screening – Recordings available
A Slovenian Presidency event explored newborn screening equity in the EU. Watch expert presentations now on YouTube.
“ERNs towards integration” – Online Italian event for the ERN community
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 »
11th National Congress of the Italian Society for the Study of Hereditary Metabolic Diseases and Newborn Screening
The 11th SIMMESN Congress will be held in Bologna from 2 to 4 Dec 2021, focusing on metabolic diseases and newborn screening.
Friends of Europe Report – Building a path for rare diseases in the European Health Data Space
A Friends of Europe report explores how the European Health Data Space can support rare disease patients through data sharing and digitalisation.
Metabern & ISNS meeting – Moving towards NBS as a system: Setting out the roadmap
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 »
Drug development and how best to work with specialised Rare Disease networks – webinar
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 »
