For the first time, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, have set out 11 Key Principles to support a harmonised European approach to Newborn Screening. The vast inequalities across Europe, coupled with technological and scientific advances highlight the urgent need to move forward from the status quo. The […]
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The ERA-NET Neuron Call for proposals for Transnational Research Projects on Neurodevelipmental Disorders was launched January 7 and will close March 9 14:00 CET Neurological and mental disorders impose a high societal and economic burden to the European population, leading to costs of more than 800 billion euros per year. A wide range of brain […]
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The way clinical trials are conducted in the EU will undergo a major change when the Clinical Trial Regulation (Regulation (EU) No 536/2014) comes into application. The Regulation harmonises the assessment and supervision processes for clinical trials throughout the EU, via a Clinical Trials Information System (CTIS). CTIS will contain the centralised EU portal and […]
Read MoreThe EJP RD is glad to invite you to the information webinar organised for potential applicants to the Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”. The webinar will take place online on February 2nd, 2021 3:00pm – 4:30pm CET. REGISTER HERE All interested […]
Read MoreYou don’t have any plans for this weekend? Take a camera with you and send us a picture that captures how is daily life when you live with a rare disease! #EURORDISAwards2021 Send your picture here: https://blackpearl.eurordis.org/photo-award/
Read MoreLooking 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, […]
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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 […]
Read MoreIn 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 […]
Read MoreVASCERNs 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. […]
Read MoreDuchenne 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. […]
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