The National Plan for Rare Diseases 2023-2025 becomes reality with the approval of the final text.
For two million patients in Italy, better therapies and fewer inequalities between regions are expected. The announcement came in the early afternoon from the Undersecretary for Health Marcello Gemmato, at the end of the meeting of the National Committee for Rare Diseases (CoNaMr), held today at the Ministry of Health. Gemmato defined the goal achieved “the result of a lot of work and tenacity of all the institutions, clinicians, patient associations and subjects competent in rare diseases that make up the CoNaMr”.
The acceleration given to the work for its approval, he noted, “testifies to the attention that the Government has towards people with rare diseases and their caregivers”. Improving access to therapies, overcoming regional inequalities, declining and effectively exploiting networks and the use of data, fully implementing Law 175/2021 with greater speed: these are the objectives of the Ministry of Health in terms of rare diseases, as Ilaria Ciancaleoni Bartoli, director of the Observatory for Rare Diseases (Omar), recalled, who asked “to go ahead to make the contents of the plan operational”. The hope, in particular, he observed, “is that now, thanks to the attention of the new executive towards the world of rare diseases and in particular to the commitment of Undersecretary Gemmato, the implementation of the Plan will proceed expeditiously and be accompanied by adequate economic resources, because let’s not forget: people with rare diseases are not series B patients”.
According to Gemmato, “the time horizon that this Executive has given itself will make it possible to implement the actions envisaged by the Plan and to test their effectiveness, with constant and punctual monitoring. Already in the coming months we are committed to working on updating the Plan, to be ready for the next deadline set in three years”. It will then be important, he underlines, “to find the necessary resources to fully implement what is detailed in the Pnmr, which directly and precisely addresses the objectives of diagnosis, treatment, training and information to improve the quality of life of people with rare disease”. This plan, he concludes, “is the milestone from which to start. As required by the Consolidated Text, the approval process of the Pnmr 2023-2025 will continue with the passage to the State-Regions Conference.
The Telethon Foundation is also satisfied with the launch of the Plan.
“The approval of the National Plan for Rare Diseases – commented the general manager Francesca Pasinelli – represents a great step forward in line with the European and international priorities on the subject of rare diseases, in particular as regards the part dedicated to research to which we have contributed through our expertise”.
Pasinelli underlined that he “strongly wanted the Plan to have a concrete approach because we believe that sharing a method is crucial for achieving the desired progress. We are confident that further steps forward can be made in the coming years, also in terms of time schedule and allocation of funds dedicated to research”. (HANDLE).
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