(Adnkronos) - “La parola cancro fa sempre paura, quando è raro ancora di più, perché non si conosce il percorso di cura. Per una malattia rara del sangue servono punti d’appoggio, una presa in carico complessiva” ha spiegato Davide Petruzzelli, presidente dell’associazione La lampada di Aladino Ets che ha dato il patrocinio al talk dal titolo: “Di che sangue sei?” inserito nel progetto “Blood inclusivity” ideato da Sobi. Un’occasione per sensibilizzare il pubblico e promuovere una cultura di inclusione basata sulle malattie ematologiche rare, puntando i riflettori sulla persona che vive con la malattia.
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00:00The thought goes obviously to my path, I am also an ex-patient, the word cancer is always scary,
00:12when cancer is also rare, it is even more scary, it is even more scary because you do not know,
00:18from the patient obviously, the path that awaits us, so for a greater reason, in a rare blood disease
00:25we need support points, which is not only, I always take the example of curing the sick cell,
00:31but it is necessary to accompany the person in their path, there is a comprehensive commissioning
00:36that serves to guide the person, the patient, towards access to the best possible structure,
00:42we have the national network of rare tumors that is still standing, but that absolutely must be implemented,
00:47this will certainly be helpful, but above all psychological support and accompaniment are required in the commissioning,
00:53which are the determining factors for better success in the path of treatment.
00:59Initiatives like these are important for many points of view, the first is to turn on the reflectors,
01:05what is rare, I always make a distinction between the great world of rare diseases and the world of rare blood tumors,
01:12which are worlds sometimes mixed, but which have absolutely different characteristics,
01:17so it is important to raise awareness, but it is also important to tell what the difficulties are,
01:22sometimes banally in access, we do not think that it is not always regulatory access,
01:28but it is an access in real life, the fifth title actually determines a regionalized health,
01:34and this sometimes is a problem, occasions like these serve to raise awareness on these issues,
01:41because we are very good, innovation is changing the history of diseases,
01:46we are not proceeding step by step to take charge of these people, and this is why initiatives like this are needed.