“Parliament will not have much say in the budget law which has a tight deadline. We have signaled an amendment at no cost and which directs the funds, already available, for newborn screenings, to be used for this” purpose. “It is a commitment that we have been carrying out since 2016. We have made other proposals that are no less important, but more difficult to deal with in a few days. We are confident that we will do a good job”. So the Honorable Maria Elena Boschi, coordinator of the new Parliamentary Intergroup for Rare Diseases, on receiving the symbolic baton from the previous Intergroup, represented by the Honorable Fabiola Bologna, at the award ceremony of the Connessioni Prize held at the Roman Aquarium, in Rome, inside of the ninth edition of the Omar Prize, Observatory for rare diseases.
“We know that time is life, it’s not an irrelevant variable – says Boschi – We wanted to start off on the right foot, but we know that there’s a lot to do. We don’t get discouraged. We know that there are people and associations that will support us and ready to lend a hand, we know we are a great team”, added the honorable Member who has already tabled eight amendments relating to rare diseases and cancers in the Economic Maneuver currently under discussion. In addition to the one relating to the expansion of newborn screening, which – as was recalled during the ceremony – makes it possible to overcome the interregional differences in access to tests that allow interventions from the first days of life with effective therapies, the other the amendments relate to the Consolidated Law on rare diseases, the approval and financing of the National Plan for Rare Diseases and the recognition of caregivers. These are just some of the issues on which the previous Intergroup, led by Senator Paola Binetti, had begun to work on and which are now being entrusted to the new one.
“I can say that with Senator Paola Binetti and the honorable Elisa Noja, who examined an important aspect such as newborn screenings, we made a great team and managed to present the text of the law before the sudden end of the legislature – underlines Bologna , coordinator of the Intergroup in the Chamber in the last legislature – A point has been reached”, the consolidated text, which “from a newborn is becoming a child, but has a very long way ahead of him in this and in the next legislatures”, adds l ‘honorable confirming the willingness, together with the lawyer Noja and other members of the previous Intergroup, to support the work of the new one.
“Thanks to the work of many other colleagues – adds Boschi – great results have been obtained with great effort, because they were achieved on a parliamentary initiative. We receive a very ambitious witness. We count on the collaboration of patients and associations and we thank you for the availability already given” in the sign of “continuity. We also count on the collaboration of all the other colleagues and we look forward to new results”.
#Rare #diseases #Boschi #Amendment #newborn #screening #reported