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Newsletter | 02.2020

News and Upcoming Events

Annual MetabERN Board Meeting Postponed
Due to the evolving public health risk associated with the worldwide outbreak of the Coronavirus, we regret to inform you that we have decided to postpone to a new date the Annual MetabERN Board meeting planned for April 2nd-4th, 2020 at the Mercure Hotel Frankfurt Airport.
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Update on U-IMD
The operational U-IMD registry was officially introduced at the last annual MetabERN meeting in Frankfurt and the first round of related projects was agreed. All members were invited to join the registry. Thus far, 11 members of MetabERN and one HCP which is not part of MetabERN have joined the project and more than 500 patient records have been added to the registry.
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ERN Status Report, January 2020
In this document, you will find a report for the activity of European Collaborative Platform and Clinical Patient Management System for the month of June.
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The Joint IRDIRC-RE(ACT) CONGRESS | MARCH 11-14, 2020
This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together scientific leaders and experts and young scientists from a variety of breakthrough scientific fields to present cutting-edge research, exchange ideas, and discuss policies related to rare diseases research.
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16th International SPDM Symposium | 19-20 March 2020
The 16th International SPDM Symposium will take place at the Lux Lisboa Park Hotel in Portugal. 
preliminary programme
National Meeting for Fabry Patients, Florence | 28-29 March 2020
It is an important opportunity for the community of patients and their families to share their experiences and build a network. Moreover, we will go right to the core of important topics about the disease with doctors and specialists and give up-to-date information about new scientific discoveries in the field. The meeting is open to patients and families, doctors, nurses, and caregivers. It is free for AIAF members and children Under 18. Registration required by March 20th.
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International Course: Training on Strategies to Foster Solutions of Undiagnosed Rare Disease Cases | 27-29 April 2020
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.
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Preceptorship Programme on Treatable LSDs | 29 June - 1 July 2020
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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SSIEM2020 | 1-4 September 2020
This year the SSIEM will take place in Freiburg, Germany. The motto this year is “Genetics meets Environment“. It will look at topics such as Environment meets Metabolism, Ethics meets Metabolism, and Reality meets Metabolism, to name a few. Early bird registration until July 2020.
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Preceptorship Medical Course | 5-6 November 2020
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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