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Disease management is focused on supportive care and prevention of HO through avoidance of injury and medical procedures that could lead to a flare-up (including surgery, biopsies, intramuscular injections and invasive dental procedures).1 Preventative management also involves prophylactic measures against falls, respiratory decline, and viral infections.1

What do the guidelines say?

The International Clinical Council (ICC) is an autonomous and independent group of 19 internationally-recognized physicians who are clinical experts in FOP.2

Some key recommendations from the ICC guidelines:*1

The diagnosis of FOP is clinical but requires genetic confirmation. If FOP is suspected, all elective procedures such as surgeries, biopsies, and immunizations should be deferred until a definitive diagnosis is made.

Each patient should have a primary physician who is willing to consult with an FOP expert and help coordinate a local care team.

Patients and their families should be informed about the International Clinical Council on FOP (ICC), the International FOP Association (IFOPA), and country-specific support groups at the time of diagnosis.

*Disclaimer: These recommendations are not the complete guidelines. Please refer to the ICC website to download the full guidance.

Learn about the ICC on FOP and their guidelines

More details and specific recommendations can be found in the ICC guidelines

Find out more

Learn about the IFOPA

Information about the International FOP Association is available for your patients with FOP

Learn more

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.6–8

Find out more

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.1,3,4,9,10

Learn more

1. Kaplan FS et al. Proc Intl Clin Council FOP 2019;1:1–111. 2. The International Clinical Council on FOP: IFOPA. Available at: www.ifopa.org/international_clinical_council_on_fop. Accessed February 2021. 3. Sherman LA, et al. Presented at ASBMR 2020; Virtual Event: September 11–15 2020. 4. Sherman LA, et al. abstract P841. J Bone Miner Res 2020;35(Suppl 1):1–337. 5. Clinical Trials.gov. NCT02745158 Available at: clinicaltrials.gov/ct2/show/NCT02745158?cond=FOP&draw=2&rank=1. Accessed March 2021. 6. Pignolo RJ, et al. Orphanet J Rare Dis 2019;14:98. 7. Kaplan FS, et al. J Bone 2010;92:686–691. 8. Kaplan FS, et al. J Bone Joint Surg Am 1993;75:220–30. 9. Kitterman JA, et al. Pediatrics 2005;116:e654–e66. 10. Di Rocco M, et al. Orphanet J Rare Dis 2017;12:110.

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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