#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.
News
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 »
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.
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 »
c4c – paediatric clinical trials awareness campaign
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. Maurizio Scarpa in the AIAF IN CONNESSIONE meeting
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 »
EJP RD – Expression of interest to participate in the first online paediatric expert patients training workshop
Young rare disease patients (12-18) can apply for an EJP RD training on research and advocacy. Applications close on 30 October 2021.
The redesigned MetabERN website is online!
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 »
Changing the clinical picture of MPS – Preceptorship medical course (in-person)
An in-person course on MPS for clinicians and nurses will be held in Manchester on 11-12 Nov 2021. Limited places available.
Changing the clinical picture of MPS – Preceptorship medical course (in-person) Read More »
