(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.
Category
🗞
NewsTranscript
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.
00:55Unfortunately, there are no drugs that act on these components of these forms of severe epilepsy, also associated with neurodevelopmental disorders.
01:09The important thing is that the drugs that we can currently use are well tolerated, do not determine an aggravation of these components of the syndrome, so that they are well tolerated from a psychological point of view and that they are well tolerated from a cognitive point of view.
01:27To facilitate the diagnosis of rare epilepsy, now you can count on the help of genetics.
01:33With 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 giving a cure, but to the good part of the pathologies we have to deal with.
01:46There is what is called a lost generation, that is, the 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.
02:07Rare epilepsy is very complex and brings with it several difficulties, such as movement and language disorders. The multidisciplinary approach therefore becomes crucial.
02:18The challenge is early diagnosis and the implementation of a multidisciplinary team that works in centers of excellence.
02:31The problem is that the centers of excellence are not evenly distributed throughout the national territory, but are found only especially in the north center of our country.
02:46Therefore, it is necessary to organize and implement PDTAs that provide this type of integrated assistance.
02:55The regulation is essential to generate a correct commissioning, both in the pediatric and adult stages.
03:02First of all, recognition of all forms of rare and complex epilepsy is urgently needed. Only a few are recognized in the ILEA and we hope that the procedures, together with the tariff, will be approved soon and give the dignity and recognition of the appropriate paths.
03:17The other major path is the design of laws on epilepsy. It would be a fundamental element to recognize all patients affected by epilepsy, not only rare forms, and to provide protection to the appropriate and homogeneous paths throughout the Italian territory.