World FSHD Day is observed worldwide every June 20 to raise awareness of facioscapulohumeral muscular dystrophy (FSHD), a genetic disease that causes progressive muscle weakness, primarily affecting facial muscles. The day originated in 2013 when Marco and Sandro Biviano, brothers diagnosed with FSHD, advocated for better care in Rome, leading to the establishment of a telehealth system for patients. The Italian government designated June 20 as FSHD Day in honor of the Biviano siblings' mother’s birthday. The first celebration took place in 2016, with goals including advocating for research into better treatments and raising funds for affected individuals and their families. A notable custom is the Orange Slice Selfie Campaign, where participants take selfies holding an orange slice over their mouths to symbolize the difficulty FSHD patients have in smiling.
June 20: FSHD Day
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