“Almost a year after the approval of the Consolidated text for rare diseases, we expected something more. The decree on the committee, which has not been convened even once, is too little”, says Fortunato Nicoletti, vice president of ‘Nessuno è excluding Odv’ – Alliance of rare diseases (Amar), speaking this morning at the first public meeting between parliamentarians of the new Legislature and representatives of rare diseases organized by the Observatory for rare diseases (Omar) in collaboration with the associations of Amar, on the occasion of the VII Orphan drug day.
“The associations – continues Nicoletti – have problems with pharmaceutical assistance and medicines, but we hope that the new Parliament will be able to deal” with the missing implementing decrees “because both the Lea (Essential Assistance Levels, ed.) and the performance levels and newborn screenings are part of a disparity that – we will never tire of repeating – is no longer acceptable at a national level. It concerns all families and rare disease patients who have the good fortune, or the bad luck, to have been born in one region or another” The Rare Disease Alliance “and the associations must be more central – exhorts Nicoletti -. The experience of the Intergroup chaired by Senator Paola Binetti, whom I thank, is not a lost experience, but” in the new legislation “takes care of rare diseases and disabilities” with decisions that “agreed and devised with whoever then implements the provisions”.
In this regard, on behalf of Amar, “we ask for a hearing with the competent commissions, Social Affairs of the Senate and Chamber, and with the Minister for Disabilities, Locatelli, who we know is a person who listens. We have to put the fragility together. In the last 3 years, the people who have had the most difficulty are families with a rare disease patient at home. We don’t hold demonstrations, we are not ‘salesmen’ – Nicoletti points out -. However, we need politics: we will give our contribution and we will never tire of doing so for issues that can no longer be postponed or negotiable, as indeed – he concludes – was admitted by the previous Intergroup itself ”.
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