NEWS

EURORDIS webinar: “How to use results of data sharing survey”

Take part in an interactive webinar to discuss the results of the first large scale quantitative survey on patients’ preferences in data protection/ sharing and how you can use the results in your advocacy.  This interactive webinar will be led by with Sandra Courbier, Rare Barometer leader and Virginie-Bros Facer, EURORDIS Research Director, the agenda Read more about EURORDIS webinar: “How to use results of data sharing survey”[…]

ERN webinar: “Clinical Features of Ataxia by Dr. Bart van de Warrenburg”

Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN) on 5 November 2019 at 3 pm CET. The speaker is Dr. Bart van de Warrenburg, a neurologist from the Radboud University Medical Centre in Nijmegen, the Netherlands. He is an Read more about ERN webinar: “Clinical Features of Ataxia by Dr. Bart van de Warrenburg”[…]

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)”[…]