Raising awareness and recognition of FOP disease

Knowing it is fibrodysplasia ossificans progressiva (FOP), also known as stoneman syndrome, means getting the appropriate care and avoiding any interventions and treatments that might worsen the condition.¹

Step into the world of someone living with FOP and discover their compelling stories of resilience and determination. Dive into a wealth of FOP resources designed to deepen your understanding of this ultra-rare condition, its challenges, and its impact on daily life.²

Image from Pignolo RJ et al. Orphanet J Rare Dis 2011;6:801^1*

The hallmark sign of FOP is shortened, turned-in big toes at birth^3-5

Useful FOP resources

Browse our library of FOP resources to learn more about the condition and find patient organizations and clinical trials.

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Your FOP healthcare team

Caring for people living with FOP requires a coordinated approach from a range of medical specialties.⁶

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*© 2011 Pignolo et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
1. Pignolo RJ et al. Orphanet J Rare Dis 2011;6:80. 2. Pignolo RJ et al. Orphanet J Rare Dis 2021;16:350. 3. Baujat G et al. Orphanet J Rare Dis 2017;12:123. 4. Pignolo RJ et al. J Bone Miner Res 2016;31:650–65. 5. Kaplan FS et al. J Bone Joint Surg Am 1993;75-A:220–230. 6. Kaplan FS et al. Proc Intl Clin Council FOP 2022;1:2–127.

Do you think it’s fibrodysplasia ossificans progressiva?