Newsletter | 03.2020

News and Upcoming Events

COVID-19: MetabERN Recommendations for all rare IMD patients and 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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MetabERN Annual Board Meeting 2020
The Board meeting is being rescheduled and it will probably take place on 8th-10th October or on 26th-28th November 2020, in Frankfurt, at the Airport Mercure hotel.
A save the date message for the rescheduled MetabERN Board meeting will be shared as soon as we have a final confirmation on the proposed dates, so please stay tuned.
ERN Status Report | February
CPMS and ECP activity report for February 2020.
read more
International Course: Training on Strategies to Foster Solutions of Undiagnosed Rare Disease Cases | 27-29 April 2020 (will be held online)
The International Course Training on strategies to foster solutions of undiagnosed rare disease cases is part of a series of training activities proposed by the EJP RD.
read more
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. 
For those planning on attending ECRD2020, it is encouraged to register for the free ECRD 2020 pre-conference webinar taking place on Thursday, 23 April from 13.00 – 14.00 CEST. This webinar is an opportunity for you to hear the latest outcomes of the Rare2030 Foresight Study and understand how the study lays a foundation for policy discussions throughout each theme of the ECRD.
register here
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.
read more
SSIEM Annual Symposium | Postponed
The Honorary Officers of the SSIEM have made the difficult decision to postpone the Annual Symposium in Freiburg to 2022 due to the evolving SARS-CoV-2 (COVID-19) pandemic.
read more
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.
read more
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