The National Plan for Rare Diseases 2023-2026 “is finally a reality: with the approval ratified today in the State-Regions Conference, a seven-year gap is filled and a framework of precise interventions is defined to give concrete answers to people with rare diseases and to their families”. So the Undersecretary for Health, Marcello Gemmato, on the sidelines of the session of the State-Regions Conference which sanctioned the agreement on the National Plan for rare diseases and on the reorganization of the rare disease network. This will guarantee more treatment and assistance to about 2 million rare patients in Iftalia.
“It is an important day, but certainly not an arrival point – 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 to 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 whole supply chain”. This government, he added, “was immediately attentive to the issue of rare diseases and will now be able to work to implement the actions envisaged in the Plan: improve access to therapies, overcome regional inequalities, implement and effectively exploit networks and use of data, fully implement Law 175/2021 with greater speed. Objectives that we can achieve thanks to a strong and mandated government”.
For the implementation of the Plan, an allocation of 25 million euros has been allocated, from the National Health Fund, for each of the years 2023 and 2024. “I can only express full satisfaction with the result achieved today. Certainly there is there is still a lot to do, but I am convinced that the path taken is the right one”, concludes Gemmato.
Let’s combine the ok to the Rare Diseases Plan with an important result
“The State-Regions Conference has approved the National Plan for Rare Diseases 2023-2025. This is the last formal step before the definitive green light. An allocation of 25 million euros has been allocated for the implementation of the Plan, from the National Health Fund, for each of the years 2023 and 2024. An important result that Uniamo – Federazione Italiana Malattie Rare has been waiting for for some time”. So Annalisa Scopinaro, president of Uniamo. “We have worked for three years – notes Scopinaro in a note – to arrive at 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 having kept the promise of February 28 to allocate funds ad hoc. Now we must all work together to be able to give substance to what is written”. The National Rare Disease Plan will allow for more effective care of people living with a rare disease 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 the subjects involved: institutions, patient associations, clinicians and the scientific community. The Plan will directly and precisely address the objectives of diagnosis, treatment, 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, preconception pathways, genetic counseling and genetic tests. But also by promoting information campaigns. Early diagnosis is also an objective, promptly referring people with suspected rare diseases to the reference centers of the National Rare Diseases Network. And again: promoting timely access to medicines and facilitating access to all therapeutic options, strengthening the registers and monitoring of the rare disease network.