(Adnkronos) - Impegno trasversale per garantire una qualità di vita migliore ai pazienti con epilessie rare e complesse e alle loro famiglie attraverso la rapida approvazione di un quadro normativo che integri le necessità sanitarie, sociali e assistenziali in un unico sistema di supporto. E’ quanto emerso dall'incontro 'Oltre l'epilessia: le sfide delle epilessie rare e complesse', che si è svolto a Roma, con la partecipazione di esperti, istituzioni e rappresentanti delle famiglie. L'evento, promosso da Adnkronos Comunicazione con il contributo non condizionato di Jazz Pharmaceuticals, ha avuto il patrocinio di Fondazione epilessia Lice e di Alleanza epilessie rare e complesse.
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00:00We urgently need to approve a regulatory framework that integrates health, social and assistance needs into a single support system, in order to guarantee a better quality of life to patients with rare epilepsy and their families.
00:19It is how much emerged from the meeting, in addition to epilepsy, the challenges of rare and complex epilepsy, promoted in Rome by DN Cronos Comunicazione, with the non-conditioned contribution of JETS Pharmaceuticals.
00:31An appointment sponsored by the Foundation Epilessia Licea and the Alliance Epilessia Rare e Complesse, which highlighted the daily difficulties related to pathologies still little known, which emerge mostly in infancy and which very often respond little to pharmacological treatments, syndromes that are characterized by the presence of other disorders such as cognitive disability and behavioral disorders.
00:55This obviously determines a whole series of problems from the diagnostic point of view, diagnostic framing and from the therapeutic point of view, because it is not enough the control of crises, admitted that it can be achieved, but it is also necessary to have an approach on these other disorders, therefore behavioral cognitive disorders.
01:17To facilitate the diagnosis of rare epilepsy, now you can count on the help of genetics.
01:23With the possibility of using genetic tests that have really had an explosion in recent years, we have been able to give a name that does not mean to give a cure, but to the good part of the pathologies we have to deal with.
01:36There is what is called a lost generation, that is, adult patients in which there is, for example, a cognitive delay, neurological disorders, disorders that can be multi-organ, therefore also interest other organs outside the central nervous system in which we still have no names and we try to give a therapy that however cures the symptoms but not the pathology itself.
01:57Rare epilepsy are very complex and bring with them different difficulties such as movement disorders and language. The multidisciplinary approach therefore becomes crucial.
02:08The challenge is early diagnosis and implementation of a multidisciplinary team organized that works in centers of excellence. The problem is that the centers of excellence are not distributed evenly throughout the national territory, but are found only especially in the north center of our country.
02:36Therefore, it is necessary to organize and implement PDTAs that provide this type of integrated assistance.
02:45The regulation is essential to generate a correct commissioning both in pediatric and adult age.
03:15In addition, it is necessary to regulate the effects of epilepsy, not only the rare forms, and to provide adequate and homogeneous protection to the paths throughout the Italian territory.