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[HEALTH] · Italy, United States · 2 sources

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Rachele to travel to United States for Batten disease treatment

Rachele, a 9-year-old girl from Gubbio, Italy, is traveling to the United States on September 21 to begin experimental treatments for Batten disease. Batten disease is a neurodegenerative genetic disorder that typically affects children, often causing vision loss followed by a progressive decline in cognitive and motor functions.

The Hope4U – Insieme contro Batten Aps association has supported Rachele’s family for over a year, organizing extensive fundraising efforts involving local institutions, businesses, and citizens. The goal was to raise approximately one million euros to fund the necessary medical journey.

Rachele’s parents released an open letter to the community expressing gratitude for the solidarity shown during this difficult period, noting that the opportunity to access these specific therapeutic pathways in the U.S. represents a vital step in fighting the progression of the disease.

Entities

Gubbio · Hope4U – Insieme contro Batten Aps · Rachele · United States