Last July 3 in Rome the Italian Federation of Rare Disease Uniamo Firmr presented the 5th edition of the MonitoRare Report, a detailed overview of the rare disease patients condition in Italy.
EMA, the Heads of Medicines Agencies (HMA) and the European Commission (EC) have launched a six-month public consultation on draft key principles which will form the basis on which the electronic product information (ePI) for human medicines will be developed and used...
EMA has recommended granting a marketing authorisation in the EU for a genetically modified product for beta-thalassaemia, a rare inherited blood condition that causes severe anaemia.
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus organizes the conference “Congenital hemoglobinopathies: scientific updates and services organization for the sickle cell disease”, planned in Bari on March 4 at 9 am.
This new year starts with three new challenging European research projects directly involving the Gianni Benzi Foundation: ARISE, EJP RD and Pepper.
EMA has launched a six-month public consultation on the draft ‘Regulatory Science to 2025’ strategy. All the stakeholders are invited to send comments by 30 June 2019 using the online questionnaire.
On November 29-30, 2018 Warsaw hosted a two-day event on SMART project results and training activities, including special sessions on the ethical and regulatory aspects of the paediatric research, on clinical trials management, paediatric networks and infrastructures.
A new article on the evidence supporting regulatory-decision making on orphan medicinal products authorisation in Europe has been published on the Orphanet Journal of Rare Disease.
On November 29-30 in Warsaw the Gianni Benzi Foundation and the Children’s Memorial Health Institute (IPCZD) are organizing the SMART Final Open workshop “Paediatric Foresight Training Course: Current status and future changes in the European paediatric biomedical research”.
The workshop is aimed at evaluating the competences gained by the Children’s Memorial Health Institute staff and the general results of SMART project.
How the role of patients in the new therapies generation processes is conceived and where and when their contribution is needed? These were the main topics of the conference organized by SIAR (Italian Society on Regulatory Sciences), in collaboration with Fondazione Gianni Benzi and Cittadinanzattiva scheduled in Rome on July 10.
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