Le malattie rare sono tantissime in Italia e nel mondo ma molto spesso la ricerca non è sostenuta e non va avanti. Negli ultimi tempi qualcosa si è smosso anche se tante restano le criticità. La Senatrice Paola Binetti, Presidente dell’Intergruppo Parlamentare Malattie Rare, spiega:
In questa legislatura le malattie rare occuperanno un posto fondamentale, sia per quanto riguarda la pubblicazione delle nuove Linee Guida (attese a brevissimo), sia per quanto riguarda i Lea. Ma è nell’attenzione specifica ai bisogni socio sanitari e non solo sanitari che ci concentreremo in questi mesi di lavoro. I diritti dei Malati Rari non possono essere discriminanti in nessun caso, a cominciare dal diritto alle cure e al lavoro. Intendiamo assicurare loro le migliori cure disponibili anche non strettamente farmacologiche e stiamo predisponendo una legge che assicuri loro la possibilità di lavorare senza pregiudizi
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