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Newsletter | 04.2020

News and Upcoming Events

COVID-19: MetabERN Recommendations for all rare IMD patients and caregivers | New Infographic
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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ERN Status Report | March
CPMS and ECP activity report for March 2020.
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ECRD 2020 Moves Online | 14-15 May
In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming ECRD will now take place ONLINE. 
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Assistant Professor ‘Preclinical therapies for inherited neurometabolic diseases’
Radboud UMC is looking for an enthusiastic and ambitious Assistant Professor (Universitair Docent) to perform preclinical therapeutic studies for inherited neurometabolic diseases. Application deadline 29 May 2020.
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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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Preceptorship Medical Course | 5-6 November 2020 (to be confirmed)
Register now for limited places at the preceptorship medical course “Optimising Care in MPS Disease at The Nowgen Centre, Manchester Royal Infirmary, United Kingdom. This one and a half-day training course is designed for clinicians and nurses to learn and share the experience within an open and stimulating academic environment.
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