ea0070aep1019 | Hot topics (including COVID-19) | ECE2020
Mukaddam Mona Al
, Pignolo Robert J.
, Baujat Geneviève
, Brown Matthew A
, De Cunto Carmen
, Di Rocco Maja
, Hsiao Edward C.
, Keen Richard
, Le Quan Sang Kim-Hanh
, Strahs Andrew
, Marino Rose
, Kaplan Frederick S
Background: FOP is an ultra-rare, severely disabling genetic disorder characterised by cumulative heterotopic ossification (HO), often preceded by episodic flare-ups, leading to physical disability and early death. Initial misdiagnosis can occur in ~90% of individuals leading to unnecessary, often harmful interventions. FOP is diagnosed and managed by multiple specialists, including endocrinologists.Objective: A prospective, 36-month, global natural...