We are thrilled to announce the release of our interview video titled « EJP RD Funded Projects: Fabienne Dobbels & Silja Schenk (COCOS-IPF) »! In this video, Fabienne Dobbels & Silja Schenk discuss their research on Idiopathic Pulmonary Fibrosis (IPF) and Progressive Pulmonary Fibrosis (PPF), highlighting the creation of a Core Outcome Set (COS) for IPF care…
We are excited to announce a specialized online training session for resources looking to connect to the EJP RD Virtual Platform. This training, being held on June 28, 2024, from 10:00 to 12:00 CEST, will guide you through the process of connecting your data or information resources to the Virtual Platform. Register for free and…
We are excited to invite you to the End-user Training Webinar for the EJP RD Virtual Platform, taking place on June 26, 2024, from 10:00 to 12:00 CEST. This online training is designed to help users navigate and leverage the Virtual Platform effectively. Registration is open hereMore information here
ERDERA is excited to announce two career opportunities for experienced professionals passionate about making a difference in rare disease research. We are looking for Project Managers to join our dynamic team, starting from 01/09/2024 at Biopark, Paris (with partial remote work): Project Manager – Funding & Education: Oversee collaborative research funding and training initiatives within…
We proudly announce two ground-breaking publications that help pave the way for the future of research data sharing and information governance 1) Getting your DUCs in a row – standardising the representation of Digital Use Conditionshttps://www.nature.com/articles/s41597-024-03280-6 This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data, healthcare…
Our latest online course provides the tools and insights you need to understand the world of health data and make a significant impact. Watch the newest trailer for the course here Enroll here: https://www.futurelearn.com/courses/health-data-ethics-and-regulatory-frameworks-in-rare-disease-research/1
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/
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…
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…
🚀 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…