Explore the final installment of our intermediate course series: « Key Solutions to Model Longitudinal Natural History Data with Application in Ataxia Diseases. » Learn about cutting-edge methodologies applied in ataxia diseases. Don’t miss out! Access all the lectures in the series here: https://www.ejprarediseases.org/clinical-trials-methodology/
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Check out the #ECRD2024 comic strip showcasing major milestones from the 1st ECRD to today and beyond!At labor #7, we celebrate the launch of EJP RD in 2019, marking a major step forward in unifying and accelerating rare disease research. Read the document here. Introduction: In Europe, four champions – Emilia, Сamilo, Rosalind and Damiano…
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Welcome to the pinnacle event in rare diseases research – the RE(ACT) Congress and IRDiRC Conference 2025, held jointly by the BLACKSWAN Foundation and the International Rare Diseases Research Consortium (IRDiRC). From March 5th to 7th, we gathered in the vibrant city of Brussels for an unparalleled exchange of knowledge and ideas. Continuing the legacy of the esteemed IRDiRC…
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🚀 Our third EJP RD MOOC on « Health Data Ethics & Regulatory Frameworks in Rare Disease Research » is launching today! Join the course here. Developed by Foundation For Rare Diseases, EURORDIS, ERN EpiCARE and Gianni Benzi Foundation, our MOOC promises valuable insights and knowledge expansion. From May 6th to June 28th, join us for an enriching…
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Today we release our latest online course on « Interim Analysis, Adaptations, and Master Protocols »!In this lecture, we will focus on the role of interim analysis to react to new data emerging from inside and outside the trial. More information on intermediate courses
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You can now watch the insightful video featuring Johan De Graaf, a Patient Expert. In his video, Johan emphasizes the vital role of patient involvement in research, highlighting significant changes observed in the past five years. Watch the full video here.
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The registration deadline for the Final EJP RD Conference has been extended to May 22nd, 2024!Join us online on May 27-28, 2024 for engaging sessions on rare disease research. Check out the agenda here for a sneak peek into the sessions and plan your conference experience!Register here This event is a partner event to the…
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The video of Alex Sverdlov’s course on « Early Phase Trial designs in Rare diseases » is now live! Dive into the statistical methods crucial for developing novel therapies amidst challenges like small patient populations and ethical constraints. Watch the course here.
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Alessandro Prigione, coordinator of the project CureMILS funded under EJP RD’s Joint Transnational Calls 2020, discusses their work on Leigh syndrome and the importance of international collaboration in a new interview. More information on CureMILSMore interviews on EJP RD funded projectsExplore the EJP RD Funded Projects Dashboard
We’re thrilled to announce the release of our second intermediate course: « Bayesian Thinking and Methods » by Prof. Emmanuel Lesaffre. Dive into the world of Bayesian analysis and enhance your statistical toolkit! Check it out now and take your learning journey to the next level! Watch the video here: https://www.youtube.com/watch?v=6TtZPdW2fVM
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