“The single text on rare diseases has just been unanimously approved by the Senate Hygiene and Health Commission. Concrete help for patients and their families and an example of good policy”. This was stated by the president of the Hygiene and Health Commission of Palazzo Madama Annamaria Parente.
“As I hoped, after the approval in the House last May, this morning the unanimous okay arrived at the so-called Consolidated Law on rare diseases also in the Senate, in the 12th Commission on Hygiene and Health. It is a step that marks a turning point in what it must become the ‘good routine’ in the management of rare patients “. This was underlined by the Undersecretary of Health, Pierpaolo Sileri. “The Consolidated Act, in fact, the result of an important work of synthesis – adds Sileri – and of synergy between the political parties in Parliament, finally regulates the homogeneity of services for rare patients throughout the territory in a simple and clear regulatory framework. national, access to orphan drugs, support for clinical research on rare diseases, proximity assistance for patients. This is the basis for declining concrete interventions in full support of the 2 million rare patients in Italy and for implementing to assistance that is an expression of the centrality of the patient and personalized care “.
“The approval by the Health Commission of the Senate of the Consolidated Law on rare diseases, which took place unanimously and without changes precisely in order to reach the definitive yes to the law as soon as possible, is a very important step forward and awaited by many patients. the bill finally frames rare diseases, provides a clear definition for these diseases, a Committee and a national coordination network, diagnostic, therapeutic and assistance plans and essential levels of assistance (Lea) for each specific disease and above all more research. years, we are at the last mile of a law that will be an outstretched hand and an extra hope for many patients and their families “. This was said by the senator of the Democratic Party Paola Boldrini, vice president of the Health Commission. “For the pathologies that already benefit from organizations and centers of reference with healthcare professionals and patients – continues Paola Boldrini – it will not be a question of starting from scratch. A specific agenda signed by me foresees in fact to treasure all the excellences already present. on the territory, such as for haemophilia and thalassemia. The existing networks will continue their valuable activity and will be able to coordinate with the new structure to benefit from concrete aid “.
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