The first week of August 2025 brought a mix of patient updates, flare-up management, and new awareness opportunities for the FOP Trust India team. Arzan’s father reported that his son is improving on the prescribed medication from Dr. Vrisha Madhuri, though the swelling has reduced only slightly. Devananda, on the other hand, is doing well […]
The road from drug discovery to treatment can take years, but for the FOP community, every step forward counts. In 2025, several promising medications continue to advance through clinical trials. These drugs, aimed at slowing or halting heterotopic ossification, are being developed and tested with active input from the global FOP community. Saracatinib, now in […]
Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disorder of extraskeletal endochondral bone formation. Heterozygous missense gain-of-function mutations in the activin receptor A type I (ACVR1) gene are present in all individuals with sporadic or familial FOP. ACVR1R206H mutations confer increased sensitivity of this bone morphogenetic protein (BMP) family receptor to activation by BMP ligands and […]
1. Introduction Fibrodysplasia ossificans progressiva (FOP) is a rare but devastating autosomal dominant genetic disorder characterized by spontaneous or trauma-induced progressive extra-skeletal bone formation, called heterotopic ossification (HO), in skeletal muscles, tendons, and ligaments [1]. HO forms through endochondral ossification, the process that creates most bones during embryonic development [2]. Endochondral ossification occurs through the […]
Abstract Introduction and importance Fibrodysplasia Ossificans Progressiva is an ultra-rare genetic disorder of progressive soft tissue ossification. Due to unawareness and poor clinical suspicion, the rate of misdiagnosis, delay in diagnosis, and unnecessary diagnostic procedures leading to permanent injury and lifelong disability is common. Here we report this rare genetic disorder in a six years […]
Introduction Fibrodysplasia ossificans progressiva (FOP) is a rare, progressively debilitating disorder first described in 1692 by Guy Patin [1]. This disease is characterized by progressive heterotopic ossification that forms normal bone in characteristic extraskeletal sites and congenital malformations of the great toes. Progressive episodes of heterotopic ossification occur in characteristic pattern first at the dorsal, axial, […]
Precious Chiamaka na six-year-old wen her mama bin notice say one small bone dey grow for di back of her hand. As she no sabi wetin dey grow for di back of her pikin hand, Precious mama carry her go hospital and na for dia dem come tell her say na her muscles dey turn […]
Fibrodysplasia ossificans progressiva is a rare and life-threatening genetic disease caused by gain-of-function mutations in the ALK2 gene, which encodes activin receptor-like kinase 2. Blueprint Medicines Corp. has elucidated the discovery of their ALK2 inhibitor BLU-782, which is now in phase II studies at Ipsen for the treatment of FOP. Source: Bio World
Most of the time, Whitney Weldon doesn’t think about her second skeleton. She was 9 the first time it really flared up. Bridges of bone grew from nowhere to freeze her right arm at a 120-degree angle, an excruciating experience that felt “like your bones are trying to come out of your skin,” she said. […]
Action The U.S. Food and Drug Administration (FDA) has approved Sohonos (palovarotene) capsules for reduction in the volume of new heterotopic ossification (extra-skeletal bone formation) in adults and children aged 8 years and older for females, and 10 years and older for males with fibrodysplasia ossificans progressiva. Sohonos is the first drug approved for patients with fibrodysplasia […]
