00:00What do you think about the health risks of rare diseases?
00:04The whole part of mental health, compared to rare diseases,
00:08is not yet taken into consideration in legislative acts,
00:14both at the European level and at the national level,
00:17so they are still considered a bit like detached,
00:21not even in a real commissioning.
00:24Rare diseases are complex diseases,
00:28and so their complexity, from the diagnostic process to their commissioning,
00:35has meant that the aspects of mental health that impact,
00:39both at the individual level, because there are some rare diseases
00:43that have neurological aspects that need to be studied
00:49and that risk a psychiatric outcome,
00:52but also many other pathologies that present intellectual disability
00:57that, if not fully, tempestually taken into account,
01:03can lead to an aggravation of the whole mental health.
01:08All this, I want to remind you that rare diseases,
01:12in themselves, because of their peculiarities of uncertainty,
01:16fragmentation, isolation, vulnerability, but also economic impoverishment,
01:22have a significant impact on mental health.
01:26This has now been taken into account, at least as an organization,
01:30both at the European level and at the national level,
01:33and this is what we are moving forward,
01:36so that in all acts, in all plans,
01:39both at the European level and at the national level,
01:43these aspects are also included.
01:46This means that, of course, we also expect
01:50that the facts join the words,
01:54so inclusion in this type of services
01:58and, above all, a great connection with the territorial level
02:02by the centers of reference,
02:05so that families are not left alone
02:09in the journey of research of mental health professionals
02:14that can help improve, in the end, the quality of life
02:19not only of the person, avoiding these psychic derives,
02:24but also helping the family, supporting the family
02:28in all this long journey of rare diseases.