New research examines availability and accessibility of EMA-approved orphan medicines for hereditary metabolic diseases across Europe.
MetabERN Publication in Orphanet Journal of Rare Diseases Read More »
New initiative explores patient experiences in rare disease care to improve healthcare services and clinical guidelines development.
“Patient Journeys”: improving care by patient involvement Read More »
International congress in Berlin unites scientists, experts and patients to discuss breakthrough research and policies in rare diseases.
The Joint IRDiRC-RE(ACT) Congress | March 11-14, 2020 Read More »
New funding scheme opening in 2020 supports workshops and conferences to strengthen rare disease research networks across Europe.
EJP RD | NETWORKING SUPPORT SCHEME (NSS) Read More »
On October 24, at 14:00 (CET), there will be a CPMS Webinar on the upcoming changes. Be sure not to miss it. Click on the article to get more details.
CPMS: Upcoming Changes | 24 October 2019 Read More »
The misdiagnosis of metabolic diseases\’ webinars are free, and a certificate of attendance will be provided by the for those who attend all sessions.
Misdiagnosis of Metabolic Diseases Course Read More »
The call for new ERN members is open until 3 Dec 2019. Key documents for the application process are now available.
Three Key Documents: Call for membership to existing ERNs Read More »
Wishing to become a member of the ERNS? The European Commission will launch in the coming weeks the first call for new members to join the existing 24 ERNs.
Call for membership to the existing ERNs Read More »
The Medical Executive Board met in Brussels with representatives of the Subnetworks, Work Packages and the Patient Board as well as the Coordinator and Vice-Coordinators.
Medical Executive Board Meeting Read More »
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 »
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 »
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 »
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