The “Training for patient representatives and advocates on leadership and communication skills” course is organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD task partners, open to patient representatives involved in the 24 European...
There are still many health conditions which only affect the paediatric population, this would be the case for 80% of rare diseases that lack approved therapeutic options. Clinical trials are essential for the development of new medicines. In the last years, in Europe...
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The European post-authorisation study (EU PAS) register is a repository launched in 2010 by the European Medicines Agency. Multi-database studies (MDS) leveraging secondary data have become an important strategy to conduct post-authorization studies (PAS) in recent...
The Spanish Data Protection Authority published, on last February, the "Code of Conduct on the processing of personal data in the field of clinical trials and other clinical research as well as pharmacovigilance" (CoC). The CoC regulates how data protection rules...
As part of the training activities proposed by EJP RD, an online training course on “Training on strategies to foster solutions of undiagnosed rare disease cases” is being organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD partners....
IRDiRC's Therapies Scientific Committee (TSC) is establishing a Task Force on Drug Repurposing Guidebook aimed at helping developers identify specific tools and practices of relevance for repurposing projects, by focusing on repurposing approaches, following the same...
The Therapies Scientific Committee (TSC) of the International Rare Diseases Research Consortium (IRDiRC) is establishing a Task Force to characterize specific commonalities amongst a large group of “disregarded” rare diseases, with the potential secondary aims to...
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the publication of a commentary on 10 years of progress and challenges of IRDiRC in the prestigious journal Nature Reviews Drug Discovery. The article summarizes IRDiRC’s vision and...
Fondazione Gianni Benzi organises the XIV Foresight Training Course “The health emergency: regulatory crash and future perspectives” that will be held virtually on December 10th, 2021 at 11.20 (CET). Register for free to the event here! Experts in the field will...