MANIFESTO FOR EU COVID-19 RESEARCH
MetabERN endorses open-access principles for EU-funded COVID-19 research to ensure rapid sharing of prevention and treatment findings.
MANIFESTO FOR EU COVID-19 RESEARCH Read More »
News
Generic Emergency Protocol
MetabERN launches an online emergency protocol generator for patients with fatty acid oxidation and glycogen storage disorders.
Generic Emergency Protocol Read More »
Kawasaki Disease Coronary Artery Aneurysm Prevention Trial
First European trial site opens at Great Ormond Street Hospital to study prevention of coronary artery aneurysms in Kawasaki Disease.
Kawasaki Disease Coronary Artery Aneurysm Prevention Trial Read More »
Clinical Patient Management System (CPMS) | New Videos
MetabERN releases educational videos explaining the Clinical Patient Management System features and data protection compliance.
Clinical Patient Management System (CPMS) | New Videos Read More »
COVID-19 Recommendations for all Rare IMD Patients and Caregivers
The COVID-19 pandemic is testing the resilience of robust health systems around the world. This may be impacting you in many different ways, such as creating additional anxiety or exacerbating other medical or therapy issues related to your Inherited Metabolic Diseases (IMD).
COVID-19 Recommendations for all Rare IMD Patients and Caregivers Read More »
European Joint Programme on Rare Diseases | Calls and Training Courses
Are you interested in calls and training courses of the European Joint Programme on Rare Diseases? Click here to discover what the EJPRD are planning.
European Joint Programme on Rare Diseases | Calls and Training Courses Read More »
IRDIRC Orphan Drug Development Guidebook
The commentary ‘Boosting delivery of rare disease therapies: the IRDiRC Orphan Drug Development Guidebook’ has been published in Nature Reviews
IRDIRC Orphan Drug Development Guidebook Read More »
New Free-to-View Live Webinars | May – June 2020
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 »
World Congenital Disorders of Glycosylation (CDG) Day
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 »
Assistant Professor ‘Preclinical therapies for inherited neurometabolic diseases’
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 »
MetabERN Board Meeting | Postponed
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 »
Research Mobility Fellowships and Research Training Workshops
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 »
