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…
The European Commission has published guidance on the clinical evaluation of orphan medical devices. Orphan devices are medical devices or their accessories, which are intended to be used for diseases or conditions affecting only a small number of individuals each year. Often, they are used to treat a rare disease or medical condition for which…
Are you an adolescent aged from 12 to 18 living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis? Are you interested in getting the skills to actively participate in scientific research to contribute to developing and shape the themes of health, rare…
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…
The European Conference on Rare Diseases and Orphan Products (ECRD) is the largest, patient-led, rare disease policy-shaping event held in Europe. The latest edition of the conference, organised by EURORDIS-Rare Disease Europe under the auspices of the Belgian EU Council Presidency, took place in Brussels and online on 15-16 May 2024. As a result of and informed…
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