News and updates on the activities, initiatives and projects involving the Fondazione Gianni Benzi Onlus.
A face-to-face workshop entitled “Modelling & Simulation: Research Methodologies for Small Populations in Rare Diseases” organised in the context of EJP RD’s ERN Workshop
The Rare Diseases Clinical Trials Toolbox has been developed as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic area.
The ERN Research Training Workshops funding opportunity is now open for applications until April 25th.
A report presenting the results from the first five years of the EMA PRIority Medicines (PRIME) scheme, has just been published.
Law no. 175 of 10 November 2021, including the provisions for the treatment of rare diseases and for the support of the research and development of orphan medicinal products, has been approved. It officially entered into force in December 2021.
As part of the training activities proposed by EJP RD, the International Summer School on Rare Disease Registries and FAIRification of Data is a 5-day training programme organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners
The FAIRopoly has been launched on the EJP RD website
Today we celebrate Rare Disease Day and Fondazione Benzi is happy to support it also this year with the initiative “Share your voice: what it means to be rare”.
The article Health technology assessment of paediatric medicines: European landscape, challenges and opportunities inside the conect4children project has been recently published in the British Journal of Clinical Pharmacology.
The article “Overview of the EU PAS register post-authorization studies performed in Europe from September 2010 to December 2018” has been recently published in the Pharmacoepidemiology & Drug Safety journal. The study provides a detailed description of all...