(Adnkronos) - “Le malattie rare di per sé, proprio per queste loro peculiarità di incertezza, frammentazione, isolamento, vulnerabilità ma anche impoverimento economico, hanno un impatto sulla salute mentale notevole. Di questo ormai si è preso atto come organizzazione, sia a livello europeo sia a livello nazionale. Ed è questo che stiamo portando avanti affinché sia a livello europeo che nel Piano nazionale malattie rare, anche questi aspetti vengano inclusi. Ci aspettiamo che alle parole si uniscano i fatti, come l'inclusione nei Lea di questo tipo di servizi e soprattutto un grande collegamento con il livello territoriale da parte anche dei centri di riferimento, affinché le famiglie non vengano lasciate ulteriormente sole nel viaggio di ricerca”. Lo ha detto Simona Bellagambi, vicepresidente Eurordis e rappresentante per l’estero di Uniamo - Federazione Italiana Malattie Rare, intervenendo all’evento istituzionale dal titolo ‘La salute parte dal cervello. Le Neuroscienze in Italia. Passato, presente e futuro’ promosso a Roma dall’azienda biofarmaceutica danese specializzata nelle neuroscienze Lundbeck Italia, in occasione del 30° anniversario di attività e impegno nel nostro Paese.
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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.