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European Joint Programme on Rare Diseases | Calls and Training Courses

European Joint Programme on Rare Diseases | Calls and Training Courses
EducationNews

EJP RD – Networking Support Scheme (NSS) Call

 

This call has been slightly modified due to the COVID-19 outbreak. 

The very exceptional situation due to the COVID-19 outbreak has consequences for the procedures of the Networking Support Scheme (NSS) Call.

  • The planned collection date of June 2nd will be cancelled.
  • For the applications for collection date of September 1st an exceptional extension of 6 months for the organisational timeframe compared to the Call text will be allowed. This means that the events may be organised between 6 and 18 months after the application date.

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Quality assurance, variant interpretation and data management in the NGS diagnostic era | 12-14 October 2020 | Online

 

The Training Courses on Standards and quality of genetics/genomics data in laboratory and clinical research practice are a part of a series of programs put forth by the EJP RD. The main objectives of the program are to decrease rare diseases (RD) data fragmentation and increase data quality through training activities on data management & quality which will raise the level of capacities and help data sharing and networking within the RD community. In detail, the objectives will be achieved through (i) the integration and implementation of existing and successful training activities and (ii) development of new specific pieces of training to address all objectives.

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International Summer School on Rare Disease Registries and FAIRification of Data | 28 September to 2 October 2020 | Online

 

RELEVANCE, INTRODUCTION AND OBJECTIVES
The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the EJP RD.

This Course is a part of the “Data Management & Quality Training” project, which aims to organize residential training courses in different countries.
The Course is made up of 5 days of training organized by ISS in close collaboration with EJP RD partners  [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), UUH (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC].
ISS has gained vast experience by organizing numerous courses focused on rare disease registries with the support of key partners. In particular, since 2013 ISS has organized and hosted the “International Summer School on Rare Disease and Orphan Drug Registries” and since 2014 the “Bring Your Own Data To Link Rare Disease Registries”.

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Latest news

  • innovation projects in clinical trials methodologies
  • EJPRD Policy Meeting | 12 – 13 January 2021
  • Manifesto for a European Health Union
  • INTERNATIONAL REGISTRY OF COVID-19 IN PEOPLE WITH RARE DISEASES
  • New Horizons in Inborn Errors of Metabolism | 16th SPDM

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Metabern Newletter

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For more information please contact
Prof. Maurizio Scarpa, MD, PhD
MetabERN Coordinator

MetabERN is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. For more information about the ERNs and the EU health strategy, please visit ec.europa.eu/health/ern

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