“At this moment objectively the situation of rare patients is not at the center of attention and of the political-parliamentary debate. We know for sure, because Minister Speranza explicitly told me in front of a series of grievances, that Undersecretary Sileri has been identified as the person in charge of rare diseases. But we also know that there is no national plan and we are not working on it with the concentration, intensity and urgency that we have been urging for some time. The law on rare diseases (the Consolidated Law, ed) that should have arrived in the Chamber on March 29 will not arrive by that date, because the entire parliamentary activity is swallowed up at this moment on the one hand by the Ristori decree and on the other by the Pnrr (National recovery and resilience plan) “, according to Senator Paola Binetti, president of the parliamentary intergroup for rare diseases.
“Rare diseases are destined to take a further step back, therefore”, urges Binetti, guest of a online meeting organized by Omar (Observatory for rare diseases) sulla Phenylchetonuria (PKU), the most widespread among rare diseases in Italy. “Neonatal screening”, crucial for this type of pathology, “which had to be refinanced and had to return with all its dignity and diagnostic power, this too has not yet been refinanced. There is a need for associations and the Intergroup to do so. get a positive shock to say that there is not only Covid. And we need to take into consideration all the problems of patients with rare diseases “.