00:00Honorable Malavasi, under these conditions the risk of inequality is very high.
00:04What must we do to make a change possible that protects children, teenagers, young people and adults?
00:09who risk not finding adequate care after obtaining a diagnosis through newborn screening?
00:17But I have to say that asking these questions means we have made a great achievement.
00:23Having managed to arrive at an early diagnosis thanks to neonatal screening obviously with new problems,
00:31new health needs and also new objectives that need to be structured.
00:36I say this because thanks to neonatal screening it is possible to diagnose rare diseases early,
00:44progressive genetic diseases that compromise the quality of life of children and consequently this early diagnosis
00:54It has nevertheless allowed us to pose new problems.
00:57The continuity between pediatric age and adulthood, the need to establish specialized centers also for adults
01:06which is obviously a topic that was not within our reach before, how to guarantee not only early diagnosis
01:13but also the right to care and continuity of assistance in a territory that must be able to structure itself in
01:19innovative way.
01:20These are some of the challenges that will be highlighted today during the presentation meeting of this paper.
01:28which was the product of long months of work to understand how to put the voice together
01:35of patients
01:36and their families, the voice of specialists, general practitioners, professionals,
01:42of all the healthcare professions who together must try to build even after the pathology has been taken into care
01:50a continuity of care that truly makes a difference in people's lives.
01:58Thank you
