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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.

News

Report Family Gathering, Baltimore 2018

Forty-nine fop families from the United States traveled to Baltimore, Maryland USA for the annual IFOPA Family Gathering. Enclosure: 1…

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Newsletter 2019

In this first newsletter of the year 2019 the board of FOP Stichting Nederland wants to thank all its members…

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Invitation to FOP symposium/ Peer Support Day

  Saturday 24 November 2018                                 …

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