00:00We are at a turning point in which the government has taken charge of what had been done in
00:09favor of the past governments, by financing with 50 million euros the national plan for
00:17rare diseases, 25 million for 2023 and 25 million for 2024, by approving 80% of the
00:24molecules approved by the EMA in order to treat the so-called orphan pharmacies, which
00:30are provided in assistance, basically free of charge, and therefore in the A range, the
00:37remaining 20% in the contracting phase or in the C range, a deep collaboration with
00:43the region, which at this moment basically establishes what are the centers of excellence
00:50of coordination and research within their regions, in order to form a network, a network
00:57that serves precisely to take care of patients affected by rare diseases.
01:00The goal of this government is to prevent the differences that unfortunately exist in
01:05Italy between the different regions, putting in place the conditions to be able to deliver
01:10all the same levels of diagnostic imaging in this case, because Article 32 of our
01:16Constitution entrusts us with this. First of all, I want to claim with pride that Italy
01:21is the first in Europe to take charge and care of patients affected by rare diseases,
01:27second only to the United States of America, therefore an element of praise for our nation.
01:34Many times we take time to describe the Italian national health system with profound
01:38criticism, we highlight this, which is one of the many peculiarities. Today we are fourth
01:43in the world as a national health system. Having said that, the goal is to prevent
01:48the differences between the different areas of our nation. In some cases, I remember
01:54the pharmacological approach, we still have 80% of the molecules distributed for free,
02:00we are talking about very expensive drugs, there is to homogenize on the territory the
02:07collaboration and stratification between the health and the social, but it is precisely
02:12the object of this plan, a plan that has been in place since 2016 and that we have taken
02:17back and relaunched on time. Fundamental in the management of rare diseases is the early
02:27commissioning. Time is not an independent variable. Before certain pathologies are diagnosed,
02:34the better they are cured, the less they are complained about. Their fundamental role is
02:39carried out by the free choice pediatrics, which are the doctors who see the children first,
02:43so they have the possibility of diagnosing, identifying certain symptoms that can lead
02:49to diseases and then take action in the network that the CONEMAR, the national committee,
02:55has contributed to and is contributing to write at the national level precisely to make
03:00clear and clear pathways of care.
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