This website is intended for international audience only, excluding the United States.
This website is intended for international audience only, excluding the United States.

Raising awareness and recognition of Fibrodysplasia Ossificans Progressiva

Watch our video - What is FOP?

Learn about the characteristic signs and symptoms of FOP, an ultra-rare genetic disorder.1

Community and Resources

Get connected to others living with FOP and hear their inspiring stories and experiences.

The most classic first sign of FOP is having shortened and turned-in big toes at birth

Know FOP

Fibrodysplasia Ossificans Progressiva or FOP is an ultra-rare genetic disorder1 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


What causes FOP?

FOP is caused by a mutation in a gene that is involved in the normal formation of bone.3,4 Researchers discovered the gene responsible for 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 your, or your loved one’s, health is managed. 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 according to current FOP management guidelines.3

Download Let’s Talk FOP


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Ipsen logo 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 ALL-ALL-003270 August 2021