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News and updates on the activities, initiatives and projects involving the Fondazione Gianni Benzi Onlus.

New EJP RD workshop in Bari

New EJP RD workshop in Bari

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

Explore the Rare Diseases Clinical Trials Toolbox

Explore the Rare Diseases Clinical Trials Toolbox

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.

“Testo Unico sulle Malattie Rare” became law in Italy

“Testo Unico sulle Malattie Rare” became law in Italy

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.

FAIRopoly

FAIRopoly

The FAIRopoly has been launched on the EJP RD website

Share your voice: what it means to be rare

Share your voice: what it means to be rare

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”.

HTA of paediatric medicines: new c4c article

HTA of paediatric medicines: new c4c article

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.

Article on EU PAS register post-authorization studies: now published

Article on EU PAS register post-authorization studies: now published

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...

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