Adnkronos (Adnkronos) – "Rare bone diseases, which account for over 10% of rare diseases in our country, require timely, integrated, and multidisciplinary diagnosis and treatment pathways that meet the needs of individuals and their families. Their impact is not limited to the clinical dimension but profoundly affects quality of life, the social and economic spheres, and the sustainability of care.
A challenge that requires increasing commitment from institutions, also considering the aging population and the need to strengthen prevention and continuity of care." These are the words of Marcello Gemmato, Undersecretary of Health, in a letter sent on the occasion of the conference organized today in Rome, on International Rare Bone Disease Day, by the Firmo Foundation for Research on Bone Diseases Onlus.
Rare diseases "are a priority for public health and for the Government, which is called upon to ensure early diagnosis, equitable access to treatments, and appropriate care pathways, overcoming regional disparities," the Undersecretary continued. "This is also reflected in the recent update to the essential levels of care, after eight years, which broadened the recognition of rare diseases, representing a significant step toward greater protection for patients and their families."
A further opportunity for discussion and strategic direction, Gemmato recalls, “was the 1st National Summit on Rare Disease Policies, promoted by the Ministry of Health on June 15th and 16th.
The joint work of experts, institutions, the scientific community, patient associations, and industry representatives has led to the definition of the "Charter of Rome," a policy document that identifies operational priorities in key areas, from governance to diagnosis, from research to therapies, up to care and information sharing. This process, he concludes, confirms the importance of a coordinated and multidisciplinary approach and strengthens the prospect of increasingly close collaboration, including at the European level.
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