Table of Contents COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys ERN Status Report | November Manifesto for a European Health Union EJPRD Policy Meeting 👉 Newsletter November 2020
Table of Contents COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers New U-IMD Website Manifesto for EU COVID-19 Research Emergency Protocol Website MetabERN lnterim Report ERN Status Report | October 2020 ERN Mobility Fellowship Call of EJP RD 👉 Newsletter October 2020
Table of Contents COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers Clinical Patient Management System (CPMS) | New Videos Manifesto for EU COVID-19 Research Emergency Protocol Website MetabERN lnterim Report ERN Status Report | September 2020 ERN Mobility Fellowship Call of EJP RD 👉 Newsletter September 2020
Table of Contents MetabERN Calendar (meetings and important deadlines) Your attention is needed: MetabERN Continuous Monitoring and Quality Improvement System (CMQS) Second call for ERN Research Mobility Fellowship to come up soon! Message from the CPMS-Helpdesk MetabERN lnterim Report ERN CPMS/ECP Status Report July 2020 MetabERN Status Report July 2020 Commission publishes evaluation of the…
In deze nieuwsbrief leest u : COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers ERN Status Report | June European Joint Programme on Rare Diseases | Calls and Training Courses IRDiRC Orphan Drug Guidebook Training Course, 12-14 October 2020 | Istanbul 👉 Newsletter June 2020
In deze nieuwsbrief leest u : COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers SAVE THE DATE Webinar series: COVID-19 and Rare Liver diseases, Thursday 04 June at 17.00 CET IRDiRC Orphan Drug Guidebook New Free-to-View Live Webinars | May – June Preceptorship Programme on Treatable LSDs | 29 June – 1 July…
In deze nieuwsbrief leest u : COVID-19: MetabERN Recommendations for all rare IMD patients and caregivers | New Infographic ERN Status Report | March ECRD 2020 Moves Online | 14-15 May Assistant Professor ‘Preclinical therapies for inherited neurometabolic diseases’ Preceptorship Programme on Treatable LSDs | 29 June – 1 July 2020 (to be confirmed) Training…
De COVID-19-pandemie test de veerkracht van robuuste gezondheidssystemen over de hele wereld. Dit kan op veel verschillende manieren invloed op u hebben, zoals het creëren van extra angst of het verergeren van andere medische of therapieproblemen met betrekking tot uw stofwisselingsziekte. In deze moeilijke periode onderstreept MetabERN het cruciale belang van het volhouden van…
de voorstelling van MetabERN-leden Uitdagingen in diagnose en behandeling van MPS en Alpha-Mannosidose pre-klinisch onderzoek om effectieve behandelingen te ontwikkelen voor zeldzame aandoeningen netwerk-ondersteunend schema events en congressen
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