Looking for exciting new events? Don’t miss out and join EURORDIS LIVE at the Rare2030 Final Conference and the 10th annual Black Pearl Award. Registrations are open HERE. Learn about the future of rare diseases at the Rare2030 Final Conference. You will have a unique opportunity to engage with some of Europe’s most prominent policymakers,…
Détails
EJP RD is organizing webinars to showcase the resources involved in the programme and address the following: (1) what is this resource, and how is it related to EJP RD ? (2) How can this resource be helpful for clinicians / researchers involved in rare disease studies? and (3) how can this resource be used by the audience? The…
Détails
In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organized on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30. All interested applicants are invited to…
Détails
VASCERNs working group VASCA, EJP RD and Castor EDC have successfully developed and implemented a process for making a Rare Disease Registry FAIR from its conception – de novo. This means that data entered in a Data Capture Platform (in this case: Castor EDC) is automatically made FAIR and available in a Fair Data Point.…
Détails
Duchenne Patient Academy (DPA) is a global patient advocacy training by the Duchenne Data Foundation to create a broader and deeper understanding of Duchenne and Becker Muscular Dystrophy (DMD and BMD). Over the course of 7 days, DPA engaged 120 patient representatives from 52 countries to explore new approaches and propose new frameworks for collaboration.…
Détails
The European infrastructure for translational medicine, EATRIS, has invited the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) team to present as part of its webinar series, EATx, to introduce RDCA-DAP to the European academic and industry audience on January 21, 2021 from 5:00 p.m. – 6:30 p.m. CET. EJP RD Coordinator, Dr Daria Julkowska…
Détails
The European Medicine Agency (EMA), with the involvement of the European infrastructure for translational medicine (EATRIS), have published an article on November 23rd on the EMA’s support for academic innovation entitled Advancing development of medicines by academia and non-profit research organizations in the European Union. An important highlight that enhances the collaboration between EMA and…
Détails
The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant to establish a structural framework in support of the research activities of the ERNs. ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact…
Détails
Ring14 International has launched the 4th Call dedicated to developing research projects on the « Ring14 » Syndrome and other diseases due to rearrangements of Chromosome 14 (Chromosome Ring 14) online. The Call for proposals intends to finance a researcher for a year with a salary of 50,000 euros. Funds should be available by the end of…
Détails
The European infrastructure for translational medicine (EATRIS) has announced the launch of the ADVANCE Online Course on December 1st. ADVANCE is a 30-month EU training project, supported by Erasmus Plus with the objective to develop a 3-stage blended learning programme to support early-career biomedical scientists in developing currently missing scientific knowledge, transversal skills and competences…
Détails