EJP RD HIGHLIGHTS
EJP RD Information/Networking Event for the internal call for innovation projects in clinical trials methodologies in limited populations applicants
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.
EJP RD – Joint Transnational Call 2021 on social sciences and Humanities Research
The aim of the call is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with a clear future benefit for patients.
THE COORDINATION TEAM IS HIRING
The Coordination Team Of EJP RD is searching for Project Manager (junior) and a Coordinator of The Scientific Secretariat of IRDiRC
The Economist Intelligence Units report on rare neurological diseases challenges
EJP RD member and Coordinator of ERN-RND Holm Graessner , alongside with Mary Kearney from the Irish College of General Practitioners and Primary Care Physician and Antonio Federico, Professor of Neurology and Director Unit Clinical Neurology and Neurometabolic Diseases in the University of Siena were involved in the production of the Economist Intelligence Unit report entitled “Navigating rare neurological diseases: meeting the challenge for policy makers, patients and healthcare professionals “.
EJP RD – SHORT GUIDE ON PATIENT PARTNERSHIPS IN RARE DISEASES RESEARCH PROJECTS
The guide aims to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research. Providing definition, examples, testimonials of patient partnerships, describing its benefits, preventing common pitfalls and accompanying applicants, this guide will support applicants to describe the role and added value of patient partnerships in research proposals.
EJP RD – video
The NEW EJP RD video is available! What is the EJP RD? How EJP RD works? What kind of support EJP RD provides? How to contact EJP RD? Do you want to have all the answers? Then watch the video and subscribe to our NEW EJP RD YouTube channel!
Results of EJP RD Joint Transnational Call (JTC2020)
In December 2019 the EJP RD launched its second Joint Transnational Call (JTC2020) co-funded with the European Commission to fund multilateral “Pre-Clinical Research to Develop Effective Therapies for Rare Diseases”.
RD-Connect GPAP-Phenostore Webinar
RD-Connect GPAP will present the new module GPAP-Phenostore, used to collect standardised phenotypic information from individuals whose omics data will be analysed. The online Webinar will take place next Thursday 26th November from 15h (CET) to 16h (CET).
Latest news
EURORDIS Rare2030 Final Conference and 10th annual Black Pearl 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, Read more about EURORDIS Rare2030 Final Conference and 10th annual Black Pearl Award[…]
EJP RD Webinar – RaDiCo
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 more about EJP RD Webinar – RaDiCo[…]
EJP RD INFORMATION/NETWORKING EVENT FOR THE INTERNAL CALL FOR INNOVATION PROJECTS IN CLINICAL TRIALS METHODOLOGIES IN LIMITED POPULATIONS APPLICANTS
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 Read more about EJP RD INFORMATION/NETWORKING EVENT FOR THE INTERNAL CALL FOR INNOVATION PROJECTS IN CLINICAL TRIALS METHODOLOGIES IN LIMITED POPULATIONS APPLICANTS[…]
Registry de novo FAIRification process – Making RD Registry FAIR from its conception
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. Read more about Registry de novo FAIRification process – Making RD Registry FAIR from its conception[…]
Duchenne Data Foundation successfully concludes third Duchenne Patient Academy
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. Read more about Duchenne Data Foundation successfully concludes third Duchenne Patient Academy[…]
RDCA-DAP: Data Sharing and Analysis to Support Rare Disease Drug Development
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 Read more about RDCA-DAP: Data Sharing and Analysis to Support Rare Disease Drug Development[…]
Academia and non-profit research organizations developing orphan medicines get a fee waiver by The European Medicine Agency
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 Read more about Academia and non-profit research organizations developing orphan medicines get a fee waiver by The European Medicine Agency[…]
The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks
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 Read more about The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks[…]
Ring14 International: Call for research grant application 2021
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 Read more about Ring14 International: Call for research grant application 2021[…]
ADVANCE Online Course
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 Read more about ADVANCE Online Course[…]