(Adnkronos) - "Far conoscere l'emofilia anche alla gente è importante per cercare di evitare lo stigma e l'isolamento sociale causato dalla paura di ciò che non si conosce”. Così Luigi Ambroso, vicepresidente di FedEmo, in occasione della seconda tappa del roadshow del progetto “Blood Inclusivity” ideato da Sobi Italia. L’evento ha ricevuto il patrocinio delle Associazioni Pazienti La Lampada di Aladino ETS, l’Associazione Italiana Porpora Immune Trombocitopenica (Aipit), la Federazione delle Associazioni Emofilici (FedEmo) e la Federazione Italiana Malattie Rare (Uniamo).
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00:00What is the goal of this project?
00:04The goal is to make the disease known to the general public
00:10because it is a rare and little known disease
00:14and to make it known means to try to avoid stigma or social isolation
00:20because what is not known is often feared.
00:23In fact, it is a delectable disease, or if we want to call it a feature,
00:29so to help patients live it with serenity.
00:34This is one of the missions, one thing that is part of the FEDEMO mission
00:38because in addition to being interested in all the clinical and psychological aspects of the disease
00:45and how the patient lives it, the parents, the caregiver, etc.,
00:48also the knowledge at the level of the general public is part of the FEDEMO mission.
00:57Well, let's say that now in the years the needs are almost all satisfied.
01:01There are still criticisms where, for example, in sport it is difficult to obtain certificates
01:10because there is, how to say, fear on the part of both beginners and in the world of sport
01:18and therefore it is necessary to make them known
01:20and this is something in which FEDEMO has always been committed, let's say,
01:24also in collaboration with CONI, with all the figures that surround sport
01:31or anyway gym or whatever else helps the patient to realize himself
01:39also through normal activities.