“After 3 years of hard work, the legislative process of the single text for rare diseases has been completed. The text represents a point of arrival but above all a starting point because to make it operational, 5 administrative acts must be approved within 6 months which will define: the national plan for rare diseases, the national committee on rare diseases, funding for research and a solidarity fund in this area. As an Observatory for Rare Diseases, we will monitor the progress of these acts. within the OMaR award, we wanted to establish the Connessioni 2.0 award dedicated precisely to the commitment of institutions and stakeholders on rare diseases “. This was stated by Francesco Macchia, editor of OMaR, on the occasion of the VIII edition of the OMaR Award on rare diseases which was held in Rome at the Ara Pacis.
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