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Fibrodysplasia ossificans progressiva (FOP) is a progressive, disabling, ultra-rare genetic disorder characterized by cumulative and irreversible heterotopic ossification (HO) within soft and connective tissues, that can lead to loss of mobility and shortened life expectancy.1–3

Learn about the characteristic signs and symptoms of FOP – Watch this animated video

FOP estimated prevalence

FOP has an estimated prevalence of 1.36 per million4

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What is FOP?

FOP is a progressive, disabling, ultra-rare genetic disorder that is characterized by cumulative and irreversible heterotopic ossification (HO) within soft and connective tissues that leads to loss of mobility and shortened life expectancy.1–3

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Diagnostic considerations

FOP is commonly misdiagnosed. However, it is important to achieve an appropriate diagnosis to avoid iatrogenic harm, such as that caused by invasive procedures.5–9

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Management
of FOP

Disease management is focused on supportive care and prevention of HO through avoidance of injury and medical procedures that could lead to flare-ups and that may cause FOP to get worse.6,7,9 The International Clinical Council (ICC) on FOP has developed guidance to help you care for your patients living with FOP.9

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1. Pignolo RJ et al. Orphanet J Rare Dis 2019;14:98. 2. Kaplan FS et al. J Bone 2010;92:686–691. 3. Kaplan FS et al. J Bone Joint Surg Am 1993;75:220–30. 4. Baujat G et al. Orphanet J Rare Dis 2017;12:123. 5. Kitterman JA et al. Pediatrics 2005;116:e654–e66. 6. Sherman LA, et al. Presented at ASBMR 2020; Virtual Event: September 11–15 2020. 7. Sherman LA, et al. abstract P841. J Bone Miner Res 2020;35(Suppl 1):1–337. 8. Di Rocco M et al. Orphanet J Rare Dis 2017;12:110. 9. Kaplan FS et al. Proc Intl Clin Council FOP 2019;1:1–111.

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Ipsen The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with Fibrodysplasia Ossificans Progressiva and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference DM-0350 NON-US-002452 July 2021