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World Rare Disease Day, a commitment to research Il Tirreno

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World Rare Disease Day, a commitment to research Il Tirreno

ROME (ITALPRESS) – On World Rare Disease Day, experts gathered at a conference in Rome to discuss the challenges and needs of patients facing rare diseases in Italy.

The conference, titled “World Rare Disease Day: what challenges for the future?”, was held in the Refectory Hall of the Chamber of Deputies and opened by Vice President Giorgio Mulè, Undersecretary of State for Health Marcello Gemmato, and President of the XII Commission Ugo Cappellacci.

Mulè emphasized the difficulty in diagnosing rare diseases, with an average diagnosis time of over 4 years. He highlighted the importance of integration between health and social care, as patients with rare diseases often face heavy social and economic burdens.

Gemmato praised Italian research efforts in the field of rare diseases, noting that Italy is a leader in Europe and second in the world for the approach and treatment of rare pathologies. He stressed the need for equal access to treatment across the nation.

The event, which was supported by Sanofi, Incyte, Novartis, and Roche, and patronized by UNIAMO Italian Federation of Rare Diseases, featured experts such as Marco Silano, Andrea Pession, and Carmine Pinto.

Annalisa Scopinaro, President of UNIAMO, highlighted the increased awareness of rare diseases in recent years but noted that more improvements are needed. She emphasized the importance of patient representatives in shaping the healthcare system to better serve those with rare diseases.

The conference aimed to shed light on the challenges faced by patients with rare diseases and to push for improvements in healthcare services for this vulnerable population.

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(Photo courtesy of the Esperia Advocacy press office) (ITALPRESS)

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