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Over half of patients with FOP are initially misdiagnosed1,2

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Not actual patient; depiction of a person living with FOP.

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Patients with FOP see on average 3.3 physicians before receiving a correct diagnosis1

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Delay in diagnosis is approximately 1.5 years1

It is important to receive an earlier and appropriate FOP diagnosis to avoid iatrogenic harm3

Unfortunately, many patients with FOP undergo unnecessary diagnostic and therapeutic interventions that can lead to long-term harm.3

Results from a questionnaire sent to patients with FOP (N=138) found:3



of patients underwent invasive procedures for diagnosis that can exacerbate heterotopic ossification (HO)

Activities and procedures that may cause harm in FOP include:4,5

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including passive
range of motion

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injections (such as

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Invasive dental

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

Go feet first!

FOP should be suspected if patient presents with bilateral great toe malformation and tumor-like soft-tissue swellings.3

Think FOP
genetic testing

Diagnosis is clinical but genetic testing for mutation in the ALK2/ACVR1 gene can also be used to confirm the diagnosis3–5

signs and symptoms

Signs and symptoms to look out for:3,6

•Malformation of great toes
•Tissue swelling
•Scalp nodules (in infants)
•Lumps on the neck and back

Patients may be seen by various healthcare professionals before being diagnosed with FOP5,7–9

Due to the symptoms of FOP, patients may be seen by a range of healthcare professionals (HCPs), including endocrinologists, orthopedists and rheumatologists, before receiving an accurate diagnosis of FOP.7–9 It is important that these HCPs are aware of the signs and complications of FOP in order to make a prompt diagnosis and avoid iatrogenic harm.3,5

Genetic counselors may also be provided for patients to discuss concerns regarding family planning.5

learn more about the role of 
different specialists in FOP LEARN MORE
Symptoms cycle

1. Sherman LA et al. Presented at ASBMR 2020; Virtual Event: September 11–15 2020. 2. Sherman LA et al. abstract P841. J Bone Miner Res 2020;35(Suppl 1):1–337. 3. Kitterman JA et al. Pediatrics 2005;116:e654–e66. 4. Di Rocco M et al. Orphanet J Rare Dis 2017;12:110. 5. Kaplan FS et al. Proc Intl Clin Council FOP 2022;1:2–127. 6. Piram M et al. J Am Acad Dermatol 2011;64:97–101. 7. Kannu P and Levy CE. J Peds 2021;232S:S3–S8. 8. Shi X et al. Medicine (Baltimore) 2020;99:e19933. 9. Hsiao E et al. Endocrine Abstracts 2020;70:AEP1025.
10. Braizat O et al. Cureus 2020;12:e10823. 11. Hanisch M et al. Head Face Med 2018;14:23. 12. Tracy MR et al. Clin Orthop Relat Res 2004:183-190.


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Please always consult a healthcare professional if you require healthcare advice or if you have any specific concerns regarding Fibrodysplasia Ossificans Progressiva. This website has been developed by Ipsen in collaboration with those living with Fibrodysplasia Ossificans Progressiva and the healthcare professionals who care for them. The information provided here is not intended to replace professional advice.

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All rights reserved. January 2024