Newsletter | 05.2020

News and Upcoming Events

We would like to introduce you to two new members of the MetabERN team
Laura Paneghetti 
I have a PhD in cell & molecular biology and a master in science communication. For the past five years, I've worked as a medical writer for a biotech company and a medical communication agency, and also as a proposal writer for innovative projects within the H2020 framework.
In MetabERN I combine all my expertise, being medical & proposal writer for various projects of the network.
 I'm really happy to be part of MetabERN, as it offers me the unprecedented opportunity to contribute to the wellbeing of patients with rare diseases. I'm looking forward to giving my contribution to the network's projects and get to know all the people involved!
Anita Bressan 
Anita joined the Metab.ERN team in May 2020 to provide CPMS training and helpdesk support to the centres. I am a social science and education specialist with vast expertise in data-share programs and learning management software.
In the coming weeks, I will be in contact with centres to assess their needs and supply targeted personal assistance with the use of the Clinical Patient Management System platform. I will also hold public webinars regarding various topics related to the use of the platform.
COVID-19: MetabERN Recommendations for all rare IMD patients & Caregivers 
To help the entire metabolic community we have developed some recommendations that aim to support all IMD patients and caregivers during the COVID-19 emergency. Please share this information within the rare metabolic community.
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Webinar series: COVID-19 and Rare Liver diseases, Thursday 04 June at 17.00 CET
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IRDiRC Orphan Drug Guidebook
This guidebook, which has been authored by the IRDiRC Task Force “Orphan Drug Development Guidebook (ODDG)”, is aimed at facilitating drug development for rare diseases by organizing available tools into a standardized framework.
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New Free-to-View Live Webinars | May - June
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. The Education Program is an MPS Europe project in partnership with MetabERN and the Excellence in Pediatrics.
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Preceptorship Programme on Treatable LSDs | 29 June - 1 July 2020 (to be confirmed)
The course will host about 24 physicians from different countries who will share experiences and being updated on the recent developments in MPS. The meeting will also provide a comprehensive global forum for experts and participants to exchange ideas and present results on all aspects of MPS.
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Training Course, 12-14 October 2020 | Istanbul 
Within the framework of the Horizon2020 project EJP RD, the 2nd Training Course on Quality assurance, variant interpretation and data management in the NGS diagnostic era”. The training course is accessible to laboratory scientists (EBMG registered), junior laboratory scientists, clinical geneticists, other medical specialists in training, policymakers and assessors for laboratory accreditation, and patient representatives, with basic knowledge in biology or medicine.
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