The Food and Drug Administration will be holding a virtual public meeting on Friday, March 5, 2021, from 9:00 a.m. to 4:00 p.m. EST to highlight strategies to support rare disease product development. Please visit the public meeting page to register for the event. To learn more about other activities relevant to rare diseases and…
If you are interested in participating in an initiative in order to contribute to the implementation of the children rights in research and medical field, the Council of Europe launched an initiative on children rights participation in decision making in the biomedical field. The UN Convention on the Rights of the Child and other Human…
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…
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…
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…
You 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/
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,…
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.…
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.…
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…