At the Ara Pacis in Rome, 6 representatives of the institutions received the ‘Connessioni 2.0’ Award from Omar-Osservatorio for rare diseases. A total of 6 institutional representatives received the award: the presidents of the Lazio and Tuscany regions, Nicola Zingaretti and Eugenio Giani, senator Paola Binetti, president of the parliamentary intergroup for rare diseases, the ladies Fabiola Bologna and Lisa Noja and the undersecretary of the Health Pierpaolo Sileri. The delivery today, as part of the ceremony of the eighth edition of the Omar award for the communication of rare diseases, carried out together with Orphanet Italia, the Telethon Foundation, the National Center for rare diseases of the Higher Institute of Health, Cnamc-National Coordination of Associations of the chronically ill of Cittadinanzattiva and Simen-Italian Society of Narrative Medicine.
Among the merits of the winners, that of having achieved something concrete and lasting for the benefit of rare patients and of having achieved this result by teaming up with other institutions, other subjects of civil society or the scientific world.
Lazio and Tuscany were awarded for “having understood the importance and having favored in their own regions the execution of experimental neonatal screening projects for SMA (spinal muscular atrophy), carrying out a constant dialogue with patient associations and civic subjects. And, even more so, for having subsequently guaranteed, on the basis of the results obtained, that these experimental projects became a stable right of every child, drawing on their own resources and anticipating the times of the national decision “, reads the motivations. The reference is to the regional resolutions issued in August, in which it is established that all children born in the two regions will be able to benefit from newborn screening for SMA. In summary, it is a test on a drop of blood, which makes it possible to identify the disease early and offer the best therapies that are finally available today. In the previous 2 years, this test had been done within a trial supported by Biogen Italia, conducted in both regions, and which had allowed the lives of 15 newborns to be saved. The experimental project for the screening of the SMA, as well as the subsequent regional resolutions, are considered an excellent example of connections between institutions, science, civil society and companies and for this they have deserved recognition.
The Connessioni 2.0 Award then took into account the most significant step forward at national level that concerned the sector: the definitive approval of the Consolidated Law on rare diseases, the first state law on the subject. A result achieved in three and a half years thanks to the teamwork that saw the honorable Bologna and Senator Binetti as the main protagonists, who in their respective commissions ensured that this law went on until the final outcome. A result achieved starting from a long cycle of hearings with the associative, scientific and civic world, and then supported by the political forces in a completely transversal way. Hence the reasons for the recognition, attributed to the two parliamentarians for “having completed the examination of the Consolidated Law on rare diseases and for having made it a state law, overcoming with stubbornness and tenacity the critical issues and obstacles that arise during the discussion they are presented and for having always guaranteed dialogue with patients and with all interested parties. For the ability, each in their own parliamentary branch, to involve colleagues across all political spectrum, reaching unanimous approval “.
Fundamental support for the achievement of this result also came from Undersecretary Sileri, the only member of the Government to have received the Connessioni Award, for “having constantly monitored and solicited the production of the documents of different ministries necessary for carrying out the examination of the consolidated text for rare diseases, a commitment that was fundamental to reach final approval “. However, there are also further reasons for the recognition of Sileri, namely that of “having paid particular attention to rare diseases, expressly requesting the delegation to the sector and, after having obtained it, for having established, together with the Minister of Health, a table that involves the various stakeholders and in particular the representation of civic subjects “.
The sixth recognition also went to a member of parliament, the honorable Noja, “for having fought, throughout the course of the pandemic, alongside the rare patients so that where necessary the condition of ‘fragile people’ would be recognized, urging the necessary actions to guarantee adequate protection and protection, through the recognition of priority in the administration of the vaccine “. A commitment which, it has been underlined, has also found an important side in the Lazio Region, which was the first to include rare patients among the priority categories to be immunized.
“It is the first time that we have given this recognition, and this is because institutional sensitivity has not only grown, but also because it is finally giving concrete results – explained the director of Omar, Ilaria Ciancaleoni Bartoli, and the publisher Francesco Macchia, who physically delivered the prizes during the evening – However, there are still many things to do: the world of rare diseases awaits important measures, such as the updating of the Lea, the updating of the national panel of newborn screening, the National Plan for rare diseases and implementing decrees of the Consolidated Law. We would be really happy to find ourselves ‘forced’ to award this prize to other personalities, and even happier if we could do it already at the next Rare Disease Day, at the end of February 2022: it would be a truly beautiful moment of celebration ” .
Each winner was given a work of art – ‘Connessioni 2.0’ – created by the artist Alberto Alunni, which with its characteristics of solidity, tangibility and durability recalls those same actions, those tangible actions of the institutions which, with the their commitment made it possible to achieve important goals.
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