ROMA (ITALPRESS) – The first national summit on rare disease policies was concluded with the presentation of the Charter of Rome. The initiative, promoted by undersecretary to Health Marcello Gemmato, who has the delegation in this matter, was opened this morning by the greeting video of the Minister of Health, Orazio Schillaci. “This summit is not a simple moment of deepening, but a passage leading to a concrete result,” said the minister. The “Charter of Rome” presented in the two days at the Ministry of Health represents “a document of address on rare diseases that will be brought to the attention of the European institutions, contributing to strengthen the voice of Italy in the policies on the subject. I am firmly convinced – Schillaci continued – that whenever there is comparison and synergy between institutions, patient associations and scientific and clinical world, we create new opportunities for innovation and progress. In these years we have made many steps forward, becoming a reference point at European level in the management of rare diseases”.
During the first day of the summit, the results of the Aifa call for rare diseases were announced, with 19 projects eligible for funding for a total value of 17.5 million, intended for the development of new therapies and advanced treatments. “The numbers confirm the centrality of the challenge: over 2 million people in Italy and about 30 million people in Europe live with one of the approximately 10,000 rare diseases known, but only 5% today has a cure,” undersecretary Marcello Gemmato. “Italy is today one of the leading countries in Europe by approach, taking charge and assistance in the field of rare diseases, second globally only to the United States,” he continued.
At the centre of the second day of the summit the presentation of the “Proposals for Europe”, an integral part of the Charter of Rome. The document contains proposals that organically address the entire path of rare diseases: from governance to early diagnosis and taken into account; from clinical research to access to treatments; from data management and sharing, respect for privacy, to the formation and correct transition of the patient along all stages of life.
Proposals for Europe show the need to strengthen an integrated approach, capable of combining coordination, early diagnosis and fair access to drugs even with possible use of joint procurement mechanisms for complex high cost therapies. Prioritaries are considered the investment in extended neonatal screening and in the culture of diagnostic suspicion, along with a structured network of research and public-private collaboration. It also centralizes data sharing and the adoption of common standards to support innovation and clinical studies. On the welfare front, according to the document, it is necessary to upgrade digital tools and shared gripping models at European level, while at the same time ensuring continuity in the care paths through structured transitions throughout the life span.
“Rare diseases are a test bench on which different health systems measure their ability to be fair, inclusive and innovative. With the Charter of Rome, Italy intends to contribute to the strengthening of sectoral policies, in Italy and among the EU Member States, while at the same time promoting the conditions for the adoption of a European Action Plan on rare diseases and the organization of a European Summit similar to that of Italy,” said Gemmato announcing Italy’s willingness to become an active part in the organization of a European Summit on rare disease policies.
– Photo of repertoire IPA Agency –
(ITALPRESS).
