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[HEALTH] · Italy · 6 sources

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Italy recognizes developmental and epileptic encephalopathies as rare diseases

Italy has officially recognized developmental and epileptic encephalopathies (Dee) as rare diseases through an update to the Essential Levels of Assistance (Lea). Published in the Official Gazette on September 30, 2026, the update introduces the new exemption group code RFG102.

This regulatory change addresses a long-standing gap that previously prevented many forms of these encephalopathies from having a specific national code, which hindered equitable access to healthcare. The new RFG102 category consolidates several conditions, including Dravet, Lennox-Gastaut, West, and Landau-Kleffner syndromes, as well as various ultra-rare genetic encephalopathies that lacked specific coding.

Carlo Andrea Galimberti, president of Lice, stated that the unified recognition is a significant step in managing the increasing complexity of genetic diagnoses. The move is expected to facilitate more appropriate and consistent national pathways for diagnosis, treatment, and patient care.

Entities

Carlo Andrea Galimberti · Ern-EpiCARE · Fondazione Dravet Ets · Italy · Lice

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