(Adnkronos) - “Come membro della Commissione Salute al Senato, mi sento in dovere di portare avanti questi testi depositati che attendono il parere del Mef”, ministero dell’Economia e delle finanze, “soprattutto la relazione tecnica, e spero che presto si possa iniziare il lavoro in commissione e portare avanti gli emendamenti”. Infatti, “oggi è stato davvero un incontro importante: tutti gli intervenuti hanno spiegato le problematiche di chi è affetto da queste malattie rare e complesse, partendo dalla problematica della farmacoresistenza” per allargarsi a “tutto ciò che riguarda ancora la malattia non normata”. Lo ha detto la senatrice Daniela Ternullo, intervenuta in occasione dell’incontro 'Oltre l'epilessia: le sfide delle epilessie rare e complesse', a Roma.
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00:00Today was really an important meeting, all the participants explained the problems that
00:13are behind those affected by this rare and complex disease, starting from the problem
00:21of the resistant drug, from the institution of the WHO and from everything that still concerns
00:29the non-standardized disease, so as a member of the Health Commission of the Senate I feel
00:37obliged to carry on with these texts that are still waiting for the opinion of the WHO,
00:46especially the technical report.
00:48I hope that we can start working in the Commission soon, carry on with the amendments, as I said
00:57recently, during the Convention, it is a transversal problem, it is a disease that I think has no
01:06political color, so I hope that from all the observations that were made this morning,
01:12a serene and quiet text can really come out.