“Unmet needs” in narcolepsy
LIVE STREAMING EVENT
Chaiperson: Gilberto Corbellini
Narcolepsy is a chronic autoimmune disorder that frequently appears in childhood. It is caused by the destruction of neurons that produce orexin, a peptide secreted by the hypothalamus. Narcolepsy is a rare condition; though characterised by easily recognised symptoms, it is unexplainably difficult to diagnose. In Italy- where narcolepsy impacts four out of every 10,000 inhabitants- less than 2,000 of the estimated 24,000 individuals living with the condition have been diagnosed. Diagnostical delays are often compounded by an incorrect diagnosis. Numerous studies have shown that a rapid diagnosis, early access to therapy, and faithful adherence to this can improve quality of life in patients, preventing learning difficulties and facilitating education, labour force entry, and normal social and affective relationships. Thanks to a series of informational and educational campaigns, Italy has been able to ensure a quick diagnosis and early access to medication for numerous children with narcolepsy. Among the most important and innovative campaigns are “Red Flags for Narcolepsy”, identifying warning signs associated with the condition; the TENAR (Telemedicine for Narcolepsy) Project, which allows virtual doctor visits for patients suspected of having narcolepsy; and the Italian Narcolepsy Registry.