This website is intended for U.S. residents only.
This website is intended for U.S. residents only.

Raising awareness and recognition of FOP

Is it FOP?

FOP is frequently misdiagnosed, learn about the signs and symptoms.

Community and Resources

Find the most up-to-date and reliable information and resources on FOP.

Know FOP

Fibrodysplasia Ossificans Progressiva or FOP is an ultra-rare genetic disorder that causes bone to form where it should not –outside of the skeleton and in the soft and connective tissues such as in the muscles, tendons and ligaments.1,2

FOP is ultra-rare – only around one or two people per million have the condition.2,3

Learn more about FOP

What causes FOP?

FOP is caused by having a faulty copy of a gene that is involved in the normal formation of bone.4 Researchers discovered the gene responsible for extra bone  formation in FOP in 2006.4

What to do if you believe you or your family member may have FOP

Getting a diagnosis of FOP is important as it can make a big difference in how you, or your loved one’s, health is managed.2 Knowing it is FOP means that interventions and treatments that might make FOP worse can be avoided as much as possible and mean you get the appropriate care. 3

Identifying FOP

The hallmark first sign of FOP is having shortened and turned-in great toes at birth.

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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. 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 NON-US-001996 December 2020