After a long and arduous parliamentary process, last May the “single text on Rare Diseases” was finally approved in the House, which will now go to the Senate. In view of this new step, the Parliamentary Intergroup Rare Diseases has promoted for September 28 the meeting ” single text on Rare Diseases. From Institutions to patients”, to be circulated in the stream, to take stock of the situation, assess the possible adjustments to make, what will be delegated to the Decrees, and on what issues you will need to pay particular attention Was the now distant march of 2019, when it was started, for the first time, the examination of what today is commonly referred to as Text Only on Rare Diseases. A lot of time has passed since then, with a tiring parliamentary process also followed on our pages. Last May, however, as reported by OMAR (Observatory Rare Diseases), the measure was finally approved in the House and will therefore soon be submitted to the Senate.
In view of this new legislative passage, the Parliamentary Intergroup on Rare Diseases has promoted for the morning of September 28 next the public meeting called the single text on Rare Diseases. From institutions to patients, which will be broadcast in streaming and which will be aimed at taking stock of the situation, evaluating in particular any corrections to be made, as well as identifying what will be entrusted to the implementing decrees and on which issues should be paid special attention.
“The purpose-the promoters explain – it will also be open to a debate with the National and Regional Institutions that will then have to apply the bill, once approved, and with those who will have to define the content of the Decrees, but also with the representatives of civic and patients on which will fall, in the last instance, the effects of the new rules and that, in addition to be a “subject” can, thanks to this opportunity for dialogue, to be active and participate in the creation of a new system, the most up-to-date and functional for the management of issues related to Rare Diseases”. (S. B.)