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Italy holds summit on bone diseases and rare disease care access
During the International Day of Rare Bone Diseases, medical experts and Italian institutions convened in Rome to address challenges in treating osteoporosis and rare skeletal disorders. A new policy paper was presented at the Chamber of Deputies to advocate for harmonized prescription criteria, improved fracture risk assessment, and better continuity in patient care pathways.
Experts highlighted that over 500 rare bone diseases exist, yet many patients face delayed diagnoses and limited access to orphan drugs. Discussions emphasized the need for specialized medical training, particularly for general practitioners, to recognize early warning signs like fragility fractures. Additionally, officials noted that while some regions exceed essential levels of care, others struggle to meet basic standards, necessitating more robust regional healthcare funding and multidisciplinary collaboration.
In a related discussion on rare diseases, Colonel Arcangelo Moro of the Military Chemical-Pharmaceutical Plant of Florence noted that only 5% of rare disease patients currently have access to a specific cure, often leaving them to rely on unregulated supplements. He proposed the military plant could serve as a centralized importer to ensure product quality and discussed the standardized production of therapeutic cannabis.
Entities
Chamber of Deputies · Fondazione Firmo · Fondazione IRCCS Policlinico San Matteo · Istituto Superiore di Sanità · Italian Ministry of Health · Italian Society of Cardiology · Laura Obici · Marco Merlo · Ministry of Health · Omar Rare Disease Observatory · Osservatorio malattie rare (Omar) · Rare Disease Observatory