Call for new members to join existing 24 ERNs

The first call for new members to join existing 24 ERNs has been launched TODAY, 30 of September 2019 until 30 of November 2019. HOW TO APPLY TO BECOME A MEMBER OF AN ERN?The membership application process will involve several steps: Review the information that is included on the Commission webpage related to the European Reference Networks and Read more about Call for new members to join existing 24 ERNs[…]

Historical moment for the rare disease community worldwide!

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 Read more about Historical moment for the rare disease community worldwide![…]

ELIXIR Innovation and SME Forum: Distributed Data Analysis – The (Health) Data Train

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 Read more about ELIXIR Innovation and SME Forum: Distributed Data Analysis – The (Health) Data Train[…]

EJP RD at the European Research and Innovation Days

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, Read more about EJP RD at the European Research and Innovation Days[…]

The new IRDiRC’s report “State of Play of Research in the Field of Rare Diseases: 2015-2018” is out!

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 Read more about The new IRDiRC’s report “State of Play of Research in the Field of Rare Diseases: 2015-2018” is out![…]

New IRDIRC Recognized Resource: “The Model Organism Aggregated Resources for Rare Variant ExpLoration (MARRVEL)”

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 Read more about New IRDIRC Recognized Resource: “The Model Organism Aggregated Resources for Rare Variant ExpLoration (MARRVEL)”[…]

Global public meeting on draft ICH guideline on clinical trials

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 Read more about Global public meeting on draft ICH guideline on clinical trials[…]

New Elixir paper published in Nature: “Leveraging European infrastructures to access 1 million human genomes by 2022”

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 Read more about New Elixir paper published in Nature: “Leveraging European infrastructures to access 1 million human genomes by 2022”[…]

ERN webinar: “Diagnostic Imaging in NMD: the basics”

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 Read more about ERN webinar: “Diagnostic Imaging in NMD: the basics”[…]