CDG and immune response: From bedside to bench and back
A study identifies 23 CDG types with immune involvement, highlighting infection risks and potential therapeutic targets.
CDG and immune response: From bedside to bench and back Read More »
News
The 2nd webinar on transition CEMA UZA Belgium by Ann VERHAEGEN and Elien RAETS
The presentation of the second webinar on transition – Center of Inherited Metabolic Diseases CEMA UZA Belgium by Ann VERHAEGEN and Elien REATS
The 2nd webinar on transition CEMA UZA Belgium by Ann VERHAEGEN and Elien RAETS Read More »
Webinar on the Transition from Childhood to Adulthood
The presentations from our first and second webinar on the transition from childhood to adulthood, a MetabERN/SSIEM collaboration.
Webinar on the Transition from Childhood to Adulthood Read More »
CPMS Technical Requirements Guide ver.9
The new CPMS technical guide includes recommended browsers for best user experience, IP addresses to be whitelisted by Hospitals and bandwidth requirements.
CPMS Technical Requirements Guide ver.9 Read More »
MPS Awareness Day: What is your MPS Challenge?
The European patient organisation MPS Europe has asked people with MPS, their relatives and their physicians: What is your MPS Challenge?
MPS Awareness Day: What is your MPS Challenge? Read More »
MetabERN has been granted the second call for INEA/CEF
MetabERN was granted the second call for INEA/CEF for a total of 210.000 euros. The project proposed to the evaluators will focus on three main activities: the CPMS, e-Learning and telemedicine.
MetabERN has been granted the second call for INEA/CEF Read More »
ERN activity Report for the month of March 2019
ERN activity report of the European Collaborative Platform and Clinical Patient Management System usage for the month of March.
ERN activity Report for the month of March 2019 Read More »
European Joint Programme on Rare Diseases (EJP RD)
The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
European Joint Programme on Rare Diseases (EJP RD) Read More »
ERN Coordinators and Board of Members States News
Comprehensive coverage of ERN Coordinators meeting and Board of Member States discussions on network expansion and system integration.
ERN Coordinators and Board of Members States News Read More »
Clinical Patient Management System Meeting Report
On January 14th, 2019, a Clinical Patient Management System meeting is took place at the University Medical Center Groningen (UMCG) in Groningen, The Netherlands.
Clinical Patient Management System Meeting Report Read More »
First EU citizens using ePrescriptions in other EU country
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
First EU citizens using ePrescriptions in other EU country Read More »
Patient involvement in medical research: what patients and physicians learn from each other
A qualitative analysis examining mutual learning outcomes between patients and researchers in rare disease research collaboration.
