Enhancing the Quality of Life of Persons Affected by Mucopolysaccharide Across Europe. By taking a multidisciplinary healthcare team approach we can better understand how to work with colleagues to support patients with MPS with their everyday healthcare needs, as well as by having a better understanding of the latest treatment options.
New Free-to-View Live Webinars | May – June 2020 Read More »
May 16th is the World Congenital Disorders of Glycosylation (CDG) Day. The worldwide CDG community joins efforts around this day to put together global awareness and education.
World Congenital Disorders of Glycosylation (CDG) Day Read More »
Enthusiastic and ambitious Assistant Professor need at Radboud UMC to perform preclinical therapeutic studies for inherited neurometabolic diseases.
Assistant Professor ‘Preclinical therapies for inherited neurometabolic diseases’ Read More »
Annual MetabERN Board meeting postponed due to Coronavirus outbreak with virtual sessions scheduled for April 2-3 via WebEx platform.
MetabERN Board Meeting | Postponed Read More »
European Joint Programme on Rare Diseases announces funding opportunities for research mobility and specialized training workshops.
Research Mobility Fellowships and Research Training Workshops Read More »
MetabERN’s Unified Registry for Inherited Metabolic Diseases reaches 500 patient records milestone and seeks expanded network participation.
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 »
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 »
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 »
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 »
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 »
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