“Congratulations FOP Australia - your hard work and extraordinary efforts add strength to our global effort in finding a treatment and a cure for FOP.”

Jeannie L. Peeper
International FOP Association
Founder and President Emeritus

“A well organized and connected international FOP community is a major contribution we can bring to achieve our major wish of a treatment”

Moira Liljesthrom
IPC rep for Argentina
Previous IPC Chairperson and IFOPA Board member
Parent of a son with FOP

"With FOP Australia, we have a vital new patient support and advocacy group and an exciting new link to a brighter future
for all individuals with FOP."

Frederick Kaplan, M.D.
Director, Center for Research in FOP & Related Disorders
The University of Pennsylvania; Philadelphia, PA USA

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FOP toe malformation

Fibrodysplasia Ossificans Progressiva is one of the rarest, most disabling genetic conditions known to medicine, causing bone to form in muscles (and other soft tissue) leading to ongoing and permanent restriction of movement. It is a progressive disease and there is no cure. Malformed big toes are nearly always associated with FOP at birth – recognising this sign can prevent misdiagnosis and catastrophic complications from unnecessary investigations that can trigger bone formation. Read more…

 

 

Facts about FOP

What is FOP?

Fibrodysplasia Ossificans Progressiva literally means “soft connective tissue turning to bone”. FOP is one of the rarest, most disabling genetic conditions known to medicine, causing bone to form in muscles (and other soft tissue) leading to ongoing and permanent restriction of movement. It is a progressive disease and there is no cure.

How is it diagnosed?

FOP is commonly misdiagnosed as there is failure to link the rapidly developing soft tissue swellings that appear on the head, neck and upper back with the malformed big toes. Usually the only sign of FOP present at birth is a characteristic of the malformation of the big toes which is present in 97% of individuals with FOP. People with FOP often undergo unnecessary diagnostic biopsies that can trigger further bone formation (as any trauma can trigger bone formation, even IM injection). Read more here.

How many people does it affect?

It is estimated that FOP affects 1 in every 2 million people. There are 15 diagnosed cases in Australia today and researchers are aware of approximately 800 cases worldwide.

Is there any treatment?

There is no effective treatment. But after many years of collaborative effort between FOP families and researchers, there are now opportunities for clinical trials into potential cures. FOP Australia wants to make sure that people in Australia and New Zealand get early and equitable access to any treatments. We encourage FOP families and clinicians to access the current medical guidelines. We aim to link FOP clinicians together to help them stay up to date with any new developments.

Can the extra bone be removed?

In theory yes, but in reality no. Surgical intervention often results in a worsening of the condition, because any trauma can trigger new bone formation. New bone will grow back and further impair mobility.

How can I help?

Show your support by joining FOP Australia and liking our Facebook page. Join in our upcoming events. You can donate to us at FOP Australia donations Donations over $2 are tax deductible and a receipt will be immediately issued. We also welcome anyone interested in organising their own event – no fundraiser is too big or small! Contact us to find out more.

Goals

FOP Australia provides support and information to FOP patients and families in Australia and New Zealand. Accurate information and connection with others is crucial when dealing with an ultra rare or orphan disease like FOP.

FOP Australia raises awareness of FOP in the community, including the medical community, on the symptoms, diagnosis and medical management of FOP.

FOP Australia raises funds for medical research both in Australia and overseas through established and world renowned FOP research centres.

FOP Australia work to ensure that people with FOP in our region have early and equitable access to any treatments developed.

Find out more about FOP Australia, our recent activities, our upcoming events, and join here.

FOP Australia News

Learn about what's going on and keep up to date. Read More