For the first time ever, in a UN official political declaration document was stated that persons with rare diseases deserve to be part of the universal health coverage (UHC). The EJP RD is very enthusiastic about this decisive turning point for the entire rare disease community and even more motivated to make a difference in…
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This is a free ELIXIR Innovation and SME Forum. The Innovation and SME Forum on the 10-11th of October with a focus on “distributed data analysis – the {health} data train” in Utrecht is open to researchers working in the data driven life-science sector, large and small companies that develop services for data management and…
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The EJP RD Coordinator, Dr. Daria Julkowska, participated to this first annual policy event of the European Commission, bringing together stakeholders to debate and shape the future research and innovation landscape. Dr. Julkowska was part of the « Tackling Rare diseases » session together with Anne Paoletti (French Research Ministry, France), Andrzej Rys (European Commission, DG SANTE,…
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The International Rare Diseases Research Consortium (IRDiRC) releases the current state of play of research in the field of rare diseases . The IRDiRC’s report “State of Play of Research in the Field of Rare Diseases: 2015-2018” is a compilation of information published in scientific journals and press releases over the period of September 2015…
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MARRVEL (Model organism Aggregated Resources for Rare Variant ExpLoration), a new IRDiRC recognized resource, is available online! It is a search engine that collects data from a number of human genomics and model organism genetics databases and displays it in a rapid user-friendly format. <<MARRVEL is a publicly available website that integrates information from six…
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Please join for the next ENDO-ERN webinar on « New therapeutic targets for the treatment of pancreatic neuroendocrine tumours » on Thursday October 10th at 16:00 – 17:00 CET (UK time 15:00 – 16:00). The webinar will be held by Jo Blair, Attila Patocs & Rajesh Thakker . For registration click here.
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The global guidance for the conduct of clinical trials is currently undergoing a major revision. As part of the worldwide consultation process, the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) is organising a public meeting to review its draft E8 (R1) Guideline ‘General Considerations for Clinical Trials’. EMA is encouraging its stakeholders to register…
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ELIXIR team has recently published in Nature Reviews Genetics. The article explores how European research infrastructures can be leveraged to facilitate transnational access to at least one million human genomes. This is building on the recently declared ‘European ‘1+ Million Genomes’ initiative’ signed by 21 European countries, which is targeted for completion by 2022. In…
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EURO-NMD host educational webinars that occur on a monthly basis. The webinars are presented with the aim of increasing each viewer’s knowledge of different specialist areas related to the neuromuscular field. Their next webinar will be taking place on Thursday 24th October from 13:00 to 14:00 GMT / 14:00-15:00 CET on the subject of “Diagnostic Imaging…
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The European Commission will launch in the coming weeks the first call for new members to join existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU. The concrete date of the launch of the call will be announced soon. General information on ERNs and call for…
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