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Welcome to the website of the Dutch FOP Foundation

This website explains the disease Fibrodysplasia Ossificans Progressiva and its impact. The website aims to be an information platform for people with FOP, their families and carers, healthcare providers, healthcare insurers and regulatory agencies. In addition to information about the disease FOP, this website contains information about the Dutch FOP Foundation.

Fibrodysplasia Ossificans Progressiva

FOP is a rare genetic disorder where bone forms in muscles, tendons, ligaments and other connective tissue. The disease was formerly known as MOP (Myositis Ossificans Progressiva). The name was changed in 1970, because other soft connective tissues such as tendons are affected also in addition to muscles. In FOP, the body forms a second skeleton, as it were. Bone also forms around joints, immobilizing them and locking them in place. The end result is that people with FOP undergo extreme ossification, fixing them in a sitting or standing position.

Do you recognize these toes?

Malformation of the large toes is virtually always present at birth and therefore constitutes a major characteristic of the disease. Then the flare-ups with bone formation start, progressing as the years go by.


Arie runs the Coastal marathon

Arie Pankras Sr will leaving on saturday 5 October, to run the coastal marathon in Zeeland with the total distance…

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Foto Van ICC In 2018

New version of the treatment guidelines

New version of the Treatment Guidelines. Recently we have received a new updated version from the ICC, about the new…

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Save The Date - Symposium & Gathering

Save the date!

15th year of FOP Foundation NetherlandsAnniversary symposium and family gathering4th till 6th October 2019

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