(ANSA) – BOLOGNA, MARCH 06 – Establish a regional table to solve problems related to the treatment of rare diseases. This was asked by the Brothers of Italy in a question to the Emilia-Romagna council by Giancarlo Tagliaferri (first signatory), Marta Evangelisti and Luca Cuoghi.
“In November 2021, Parliament approved the consolidated text on rare diseases entitled ‘Provisions for the treatment of rare diseases and for the support of research and production of orphan drugs’ and in June 2021 it was established at the Ministry of The Technical Table on rare diseases is healthy. Like other technical tables and technical-scientific committees under the guidance of the same Minister, significant results are not appreciated”, explain the three councilors who recall how “while the Ministry of Health itself hopes the Since the establishment of the Technical Table also at the regional level, the patient and civil society associations operating in the sector of rare diseases have been asking for some time that this Technical Table provides concrete results of its work, considering its establishment urgent but above all its contribution cannot be postponed concrete: on the just passed World Rare Disease Day on Tuesday 28 February 2023 it was reiterated the urgent need for moments of institutional discussion at the regional level, to better address the problems relating to the sector: for the reasons mentioned above, it is urgent and appropriate to establish the regional Technical Table on the subject of rare diseases, also in consideration of the particular institutional current situation and social nature of the topic in question”. (HANDLE).
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