The National Plan for Rare Diseases 2023-2026 "is finally a reality: with the approval ratified today in the State-Regions Conference, a gap of seven years is filled and a framework of precise interventions is defined to give concrete answers to people with rare diseases and their families". So the Undersecretary for Health, Marcello Gemmato, on the sidelines of the session of the State-Regions Conference that sanctioned the agreement on the National Plan for Rare Diseases and on the reorganization of the network of rare diseases. This will guarantee more care and assistance to about 2 million rare disease patients in Iftalia.
"It is an important day, but certainly not a point of arrival - notes Gemmato -. Now it is important to explain the Plan in all its parts, in the objectives and above all in the indicators that define its achievement and keep it alive by putting it into practice with the support of all the subjects involved: institutions, patient associations, clinicians and the scientific community, the entire supply chain". This government, he added, "has been immediately attentive to the issue of rare diseases and will now be able to work to implement the actions envisaged by the Plan: improving access to therapies, overcoming regional inequalities, declining and effectively exploiting networks and the use of data, fully implementing Law 175/2021 more quickly. Objectives that we can achieve thanks to a strong government and mandate".
For the implementation of the Plan, an allocation of 25 million euros has been provided, from the National Health Fund, for each of the years 2023 and 2024. "I can only express full satisfaction with the result scored today. Surely there is still a lot to do, but I am convinced that the path taken is the right one", concludes Gemmato.
We unite, an important result the ok to the Rare Diseases Plan
"The State-Regions Conference has approved the National Plan for Rare Diseases 2023-2025. This is the last formal step before the final go-ahead. For the implementation of the Plan, an allocation of 25 million euros has been provided, from the National Health Fund, for each of the years 2023 and 2024. An important result that Uniamo - Italian Federation of Rare Diseases has been waiting for a long time". So Annalisa Scopinaro, president of Uniamo. "We have worked three years - notes Scopinaro in a note - to get to this Plan, we are happy that the decisive push for its approval has arrived. We are also grateful to the Minister of Health Orazio Schillaci for keeping the promise of 28 February to allocate ad hoc funds. Now we must all work together to be able to give substance to what has been written". The National Rare Diseases Plan will allow a more effective care of people living with rare diseases with the aim of constant and above all homogeneous therapeutic support throughout the national territory. "As stated by Undersecretary Gemmato, the Plan needs the support of all those involved: institutions, patient associations, clinicians and the scientific community. The Plan will address in a direct and precise way the objectives on diagnosis, treatments, training and information to improve as much as possible - concludes Uniamo - the quality of life of the rare disease community".
The new Plan aims at prevention by providing, for example, preconceptional pathways, genetic counseling and genetic testing. But also by promoting information campaigns. The objective is also early diagnosis, promptly referring people with suspected rare disease to the reference centers of the National Network of Rare Diseases. And again: facilitate timely access to medicines and facilitate access to all treatment options, strengthen registries and monitoring of the rare disease network.