«Today we wrote together a beautiful history page for rare diseases. In fact, the final text of the National Plan for Rare Diseases (PNMR) 2023-2025 was approved during the meeting of the National Committee for Rare Diseases (CoNaMr), held this afternoon at the Ministry of Health»: announced by Marcello Gemmato, Undersecretary of State for Health with responsibility for Rare Diseases and health manager of Fratelli d’Italia. “The Plan is 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, and the acceleration given to the work for its approval testifies to the attention that the Government has towards people with rare diseases and their caregivers. The time horizon that this executive has given himself 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. Now it is important to find the resources necessary to fully implement what is detailed in the Plan, which directly and precisely addresses the objectives on diagnosis, treatment, training and information to improve the quality of life of people with rare diseases as much as possible”.
The news comes just before World Rare Disease Day, which is celebrated on 28 February. An important and long-awaited result, which the ORare Disease Observatory (OMaR) welcomes with great satisfaction: “We congratulate Undersecretary Gemmato for the determination with which he has pursued the objective of having the new National Plan for Rare Diseases dismissed by 28 February”, comments Ilaria Ciancaleoni Bartoli, director of OMaR. The previous Plan expired in 2016 and its update was therefore much awaited. “The hope is that the implementation of the Plan will now proceed quickly and be accompanied by adequate economic resources, because people with rare diseases are not second-class patients”.
The approval process of the PNMR 2023-2025 continues with the passage to the State-Regions Conference.
Photo on Ben Sweet are Unsplash