RE(ACT) Congress and IRDiRC Conference joint online event

EJP RD is glad to be a part of the organisation of the RE(ACT) Congress and IRDiRC Conference joint online event that will take place on 13-15 January 2021. It aims to bring together scientific leaders, patients, and policy makers to advance research on rare diseases. Patients and patient organisations will share their perspectives and experiences.  To obtain your discount, register here before 31st of December.   Read more about RE(ACT) Congress and IRDiRC Conference joint online event[…]

The European Commission jointly evaluates the Orphan and Paediatric Regulations

The European Pharmaceutical Strategy was recently released and it includes strengths and weaknesses of the legal instruments and the European Commission is preparing the review of the legislation on medicines for rare diseases and children: the Orphan and Paediatric Regulations. The EFFECTIVENESS of both regulation on the R&D of new medicines for these patients and their timely availability and coverage of unmet needs, the EFFICIENCY in improving their Read more about The European Commission jointly evaluates the Orphan and Paediatric Regulations[…]

Rare Diseases Cures Accelerator – Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop

To showcase the importance of data sharing in rare disease drug development and to highlight the first year milestones, the Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19th. RDCA-DAP is a platform that serves Read more about Rare Diseases Cures Accelerator – Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop[…]

EMA’s Workshop on Support for Orphan Medicines Development

EJP RD will be presenting at The European Medicines Agency’s Workshop on Support for Orphan Medicines Development which will take place via broadcast on 30 November 2020. The goal of this event is to emphasise on an early medicine development and regulatory interactions.  Existing tools such as orphan designation, protocol assistance and PRIME scheme will be Read more about EMA’s Workshop on Support for Orphan Medicines Development[…]

Big Data Steering Group for 20-21

The Big Data Steering Group set up by the European Medicines Agency (EMA) and the Heads of Medicines Agencies (HMA) has published its first workplan which sets actions to be delivered in 2020-21. The workplan aims to progress evolution to data-driven regulation through smart working, leveraging international collaboration with stakeholders and the use of remote Read more about Big Data Steering Group for 20-21[…]

EURORDIS Black Pearl Awards 2021

The awards strive to recognise and put the spotlight on the exceptional accomplishments in the field of rare diseases. This includes the ever-growing contributions of patient advocacy groups, volunteers, scientists, companies, media, and policy makers towards alleviating the impact of rare diseases on people’s lives. Awards categories & criteria The 13 award categories, listed below, Read more about EURORDIS Black Pearl Awards 2021[…]