U-IMD UPDATE 2020
MetabERN’s Unified Registry for Inherited Metabolic Diseases reaches 500 patient records milestone and seeks expanded network participation.
News
Rare Disease Day 2020: Get involved
Annual international campaign raises awareness about rare diseases and their impact on patients’ lives on February 29, 2020.
Rare Disease Day 2020: Get involved Read More »
MetabERN Publication in Orphanet Journal of Rare Diseases
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 »
“Patient Journeys”: improving care by patient involvement
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 »
EJP RD | NETWORKING SUPPORT SCHEME (NSS)
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 »
PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES
The ERA-Net E-Rare has successfully implemented ten Joint Transnational Calls for rare disease research projects since 2006.
PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES Read More »
X-LINKED ADRENOLEUKODYSTROPHY | Clinical Trial
Sant Joan de Deu Hospital (Barcelona, Spain), one of the 69 MetabERN healthcare providers, has opened a clinical trial that recruits patients for an open-label study in male pediatric patients with cerebral X-LINKED ADRENOLEUKODYSTROPHY (cALD) to assess the effect of a new experimental treatment on the progression of cerebral lesions.
X-LINKED ADRENOLEUKODYSTROPHY | Clinical Trial Read More »
NCL Research Award 2019
The NCL Foundation offers €50,000 for research on CLN3 disease. Junior scientists and clinicians can apply by 30 Nov 2019.
NCL Research Award 2019 Read More »
Three Key Documents: Call for membership to existing ERNs
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 »
MetabERN Affiliated Partners (AP)
Malta has designated the Mater Dei Hospital (MDH) as a National Coordination Hub for ERNs and MetabERN has been nominated by six associated national centres.
MetabERN Affiliated Partners (AP) Read More »
Call for membership to the existing ERNs
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 »
Medical Executive Board Meeting
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 »
