<caption><image_0>The image shows a man with a bald head and glasses standing in front of a purple background. He is wearing a black blazer and a light grey collared shirt. He has a serious expression on his face and is looking directly at the camera. Behind him, there is a large circular diagram with arrows pointing in different directions. The diagram appears to be related to a presentation or presentation.</caption><transcript><audio_1> Innanzitutto sono felicissimo di essere qui oggi per ritirare questo riconoscimento di paziente esperto UPADI. È stato un corso interessantissimo, io sono il papà di un bambino di 5 anni affetto da una</transcript><transcript><audio_2> con altre famiglie abbiamo creato la nostra associazione un paio d'anni fa, Famiglia Agna1, una malattia come ho detto molto rara che conta al momento solamente una ventina di pazienti in Italia.</transcript><transcript><audio_3> progetti di ricerca e questo corso per noi sarà importantissimo perché ovviamente ci siamo trovati catapultati in un ambiente che non conosciamo, non conoscevamo niente riguardo alle malattie genetiche rare, non</transcript><transcript><audio_4> progetti di ricerca scientifica, quindi non conoscevamo il processo di sviluppo di un farmaco. Adesso che abbiamo tutte queste nozioni sicuramente saremo in grado di valutare meglio un</transcript> so first of all I am very happy to be here today to collect this recognition as an expert patient pati it was a very interesting course I am the father of a 5 year old child suffering from a very rare genetic disease with other families we created our association a couple of  years ago family 1 disease as I said very rare which currently only has around twenty patients in Italy we are now approaching the first research projects this course will be very important for us because obviously we found ourselves catapulted into an environment we are not familiar with we didn't know anything about  regarding rare genetic diseases we didn't know anything about scientific research projects so we didn't know the development process of a drug now that we have all this knowledge we will certainly be able to better evaluate
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