(Adnkronos) - "Oggi è una giornata straordinaria, celebriamo un'ulteriore innovazione che riusciamo a mettere a disposizione dei pazienti con miastenia gravis generalizzata". Lo ha detto Anna Chiara Rossi, vicepresidente e general manager Italy di Alexion, AstraZeneca rare disease in occasione dell’evento con cui è stata annunciato il rimborso di ravulizumab, un inibitore del complemento C5 a lunga durata d'azione, come terapia aggiuntiva alla standard per il trattamento di pazienti adulti.
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00:00Today is an extraordinary day because we are here to celebrate another innovation that we can make available to patients with myasthenia gravis and their families, that is, Ravulizumab.
00:17A drug that comes from our research, it was studied in Italy, a drug that we made available before, through compassionate use, so before it was approved by AIFA and today it is finally available commercially.
00:34It is certainly an important solution from the point of view of effectiveness for these patients, but also something more. In fact, thanks to the fact that it can be supplied only six times a year, it also guarantees an excellent quality of life.
00:52Our commitment does not stop here. Today we have several studies in progress on other pathologies and also on myasthenia gravis. In fact, we have about 22 programs in progress in Italy and involve about 100 rare diseases centers.
01:11We believe that it is essential not only to deal with research and development of innovative drugs, but also to collaborate with the entire ecosystem that runs and is part of the world of rare diseases to try to improve the daily life of these patients.
01:28This is because the path of the rare patient is a path of obstacles, starting with diagnosis, then of course the possibility of having an effective therapy available, and then also in living what is the daily life.
01:42In doing this, we believe that it is essential to work in concert with the Association of Patients, with the scientific community and also with the institutions to really understand what the needs are and to create solutions together, because only in this way can you really be able to create something useful.
02:04And this is our way of working, what we do every day. For example, in myasthenia gravis we have given life to a podcast called GMG My Way. How does it come about? It comes from the need of the Association, which expressed it to us, in trying to have a tool that would allow people who live with myasthenia gravis to make those around them understand what the impact of the pathology is.
02:31So we have co-created, together with the AIM Association, these podcasts, where patients and people have told what their daily difficulties are. It is a podcast that has been very successful and we hope it can really help people who live with this pathology to be more included and to have a simpler daily life.