(Adnkronos) - Con l’obiettivo di promuovere una cultura di inclusione verso le persone che convivono con le malattie ematologiche, comprese quelle rare, Sobi ha organizzato a Roma l’incontro ‘Di che sangue sei?’. Parte del progetto ‘Blood Inclusivity’ di Sobi, l’evento è stato ospitato dallo Spazio Mastai del Palazzo dell’Informazione ed ha visto la partecipazione di clinici, associazioni pazienti ed esperti scientifici.
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00:00After the success of the first stop in Catania, the roadshow of the BLOOD INCLUSIVITY project,
00:10designed by Sobi Italia, took place in Rome, where it proposed a talk entitled
00:15Di che sangue sei? An opportunity to raise awareness of the public and promote a culture
00:20of inclusion based on rare hematological diseases, focusing on the person who lives with the disease.
00:27Certainly, rare hematological diseases have been able to take advantage of all the new therapies
00:37that have developed in the last 30-40 years, and therefore the therapeutic possibilities are many.
00:48This certainly leads to a greater awareness of the patients and also a greater exchange
00:58between the doctor and the patient in what concerns the choice of the most suitable therapy
01:05to the patient's lifestyle, that is, to his needs, to his quality of life.
01:11So, let's say that the choice of therapy has become a much more complex thing,
01:18which takes into account many variables, both clinical but also of the patient's quality of life
01:26and his needs.
01:28During the talk, the needs of the patients, the unmet need, the progress made and the future challenges
01:34were discussed, with the aim of promoting a real culture that guarantees equality
01:40and equal dignity also in the health sector.
01:42The project represents the concrete commitment of SOBI in ensuring sustainable access to innovative therapies,
01:49thus improving the quality of life of those who deal with rare diseases.
01:53This path marks a fundamental step to build a society that welcomes diversity,
01:59transforming those that initially seem difficult into resources and opportunities for growth.
02:04Initiatives like these are important for many points of view.
02:07The first is to turn on the reflectors.
02:10What is rare?
02:12I always make a distinction between the great world of rare diseases and the world of rare blood tumors,
02:17which are worlds that are sometimes mixed and have absolutely different characteristics,
02:22so it is important to raise awareness, but it is also important to tell what the difficulties are,
02:27sometimes banally, in access.
02:29We do not think that it is not always the regulatory access, AIFA for example,
02:33but it is an access in real life.
02:35The fifth title actually determines a regionalized health, and this is sometimes a problem.
02:41Occasions like this serve to raise awareness on these issues,
02:46because we are very good now, innovation is changing the history of diseases,
02:51we are not proceeding step by step with taking these people in charge,
02:55and this is why initiatives of this kind are needed.