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U.S. healthcare professionals only.

Resources for your patients at every step of their journey

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Where is your patient on their FOP journey?

As a lifelong condition, it is crucial that people with FOP are supported throughout the course of their disease. This page highlights how you can help people with FOP and their caregivers face some of the challenges that may arise.


Click on the links below to find resources designed to complement your care.

How can you help icon

How can you help?

FOP diagnosis icon

FOP diagnosis

How do I know if my patient has FOP?

Early diagnosis of FOP is essential to help delay or prevent disease progression and avoid unnecessary harm.1,2 FOP can be diagnosed clinically on the presence of certain ‘red flags’; however, due to the rarity of FOP, many physicians are unaware of the common signs.2,3

Adjustment period icon

Adjustment period

How can I support my patient after an FOP diagnosis?


Being diagnosed with FOP can be an isolating time for patients and their families. Patient support organizations can help by connecting patients with other people going through similar experiences.4,5

Establishing a care network icon

Establishing a
care network

How can I provide my patient with the multifaceted care they require?


FOP falls under many 
medical specialties and a multidisciplinary approach is essential for high-quality patient care. Primary care physicians can support patients by advocating for access to expert healthcare and coordinating a multidisciplinary team.6–8

Living with FOP icon

Living with FOP

What do I need to be aware of when managing patients with FOP?


Medical management for FOP is supportive and patients 
may require adaptations to daily living as the disease progresses.8 As minor trauma can trigger new flare-ups,9,10 special medical considerations need to be taken to prevent disease exacerbation.8

How can you help icon

How can you help?

FOP diagnosis icon FOP diagnosis

How do I know if my patient has FOP?

Early diagnosis of FOP is essential to help delay or prevent disease progression and avoid unnecessary harm.1,2 FOP can be diagnosed clinically on the presence of certain ‘red flags’; however, due to the rarity of FOP, many physicians are unaware of the common signs.2,3

Adjustment period icon Adjustment period

How can I support my patient after an FOP diagnosis?


Being diagnosed with FOP can be an isolating time for patients and their families. Patient support organizations can help by connecting patients with other people going through similar experiences.4,5

Establishing a care network icon Establishing a 
care network

How can I provide my patient with the multifaceted care they require?


FOP falls under many 
medical specialties and a multidisciplinary approach
is essential for high-quality patient care. Primary care physicians can support patients by advocating for access to expert healthcare and coordinating a multidisciplinary team.6–8

Living with FOP icon Living with FOP

What do I need to be aware of when managing patients with FOP?


Medical management for FOP is supportive and patients 
may require adaptations to daily living as the disease progresses.8 As minor trauma can trigger new flare-ups,9,10 special medical considerations need to be taken to prevent disease exacerbation.8

View the diagnostic handbook from Tin Soldiers for key steps to identifying FOP, and visual examples of the signs and symptoms.

Diagnostic handbook

IFOPA have created a welcome packet full of information and resources to support newly diagnosed patients.

IFOPA welcome packet

View our guide to the multidisciplinary network to learn more about the ways it can work, and the specialties involved.

Guide to multidisciplinary network

The ICC provides guidelines on the medical management of FOP, developed by FOP experts across a range of specialties.

ICC management 
guidelines

Read and download this leaflet for more information on how to recognize FOP.

Pre-diagnostic leaflet

Find out which patient organizations are active near you and how your patients 
can contact them.

Patient organization 
list

Read a two-page summary 
of the ICC guidelines aimed specifically at emergency care providers.

ICC guidelines for 
emergency care

Read and download this leaflet to learn more about the progression of FOP and how you can help your patients after diagnosis.

Post-diagnostic leaflet

The IFOPA emergency toolkit helps your patients share their medical history with medical professionals as quickly as possible.

Emergency toolkit

View the diagnostic handbook from Tin Soldiers for key steps to identifying FOP, and visual examples of the signs and symptoms.

DIAGNOSTIC HANDBOOK

IFOPA have created a welcome packet full of information and resources to support newly diagnosed patients.

IFOPA welcome packet

View our guide to the multidisciplinary network to learn more about the ways it can work, and the specialties involved.

Guide to multidisciplinary network

The ICC provides guidelines on the medical management of FOP, developed by FOP experts across a range of specialties.

ICC management 
guidelines

Read and download this leaflet for more information on how to recognize FOP.

Pre-diagnostic leaflet

Find out which patient organizations are active near you and how your patients 
can contact them.

Patient organization 
list

Read a two-page summary 
of the ICC guidelines aimed specifically at emergency care providers.

ICC guidelines for 
emergency care

Read and download this leaflet to learn more about the progression of FOP and how you can help your patients after diagnosis.

Post-diagnostic leaflet

The IFOPA emergency toolkit helps your patients share their medical history with medical professionals as quickly as possible.

Emergency toolkit

ICC, International Clinical Council on FOP; IFOPA, International FOP Association.

1. Kaplan FS et al. Pediatrics 2008;121:e1295–1300. 2. Kitterman JA et al. Pediatrics 2005;116:e654–e661. 3. Pignolo RJ et al. Orphanet J Rare Dis 2011;6:80. 4. International Fibrodysplasia Ossificans Progressiva Association. Available at: www.ifopa.org. Accessed July 2023. 5. Kaplan FS et al. Proc Intl Clin Council FOP 2022;1:2–127. 6. Pignolo RJ et al. Orphanet J Rare Dis 2022;17:168. 7. Di Rocco M et al Orphanet J Rare Dis 2022;12:110. 8. Kaplan FS et al. Proc Intl Clin Council FOP 2022;2 1–127. 9. Lanchoney TF et al. J Pediatr 1995;126:762–764. 10. Glaser DL et al. Clin Orthop Relat Res 1998:10–116.

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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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