Working to raise awareness and help find a cure

FOP Action was founded to offer a forum for advice and support to all those affected by FOP, creating a place to find out about helpful aids and equipment and to exchange views and ideas. Since the discovery of the FOP gene in 2006, finding treatments and a cure are a distinct possibility but we need help to support research.

Important - Early sign to help diagnose FOP

We need to raise £120,000 by Christmas 2014 to keep the research team at Oxford working next year

Together we've so far raised £20,508.51

2014 Conference and Family Gathering

Radisson Blu, Manchester

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FOP Action invites you to the 2014 FOP Family Gathering. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel on Saturday 17th May with pre-booked clinical appointments available Friday 16th, Saturday 17th (afternoon), and Sunday 18th May.

World renowned FOP experts will be in attendance, presenting the latest on FOP research, the search for treatments, a cure and the path to clinical trials.The event will include: clinical appointments, presentations, workshops, evening meal and light entertainment.

Childcare will be provided where possible. Children attending with an adult are free.

What is FOP?

FOP in an abbreviation for Fibrodysplasia Ossificans Progressiva previously known as Myositis Ossificans Progressiva. FOP is a rare and distressing medical c...

Who can get FOP?

Most cases of FOP are new, meaning no one else in the family has FOP. This happens because sometimes unexpected changes (or mutations, the scientific word for c...

Have I got FOP?

FOP often begins in the neck and the shoulders and progresses along the back, trunk and limbs of the body. People are born with malformed big toes (short, bent ...

How can I Help?

You can donate money to Oxford University where Professor James Triffitt of Oxfords Institute of Muscloskeletal Sciences is one of the few scientists in the wor...

FOP Action Slides 2013 & Autumn 2013 FOP Update & Donation Update Mar 2013 & FOP Action Minutes

FOP News

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  • Fundraising events

    HELP US SPREAD THE WORD, FOPACTION HAS NOW GOT A FACEBOOK PAGE. PLEASE VISIT OUR PAGE AND "LIKE" IT, KEEP UP TO DATE WITH EVERYTHING FOP. PLEASE HELP US REACH A 1000 LIKES AND CLICK ON THE FOLLOWING PAGE. https://www.facebook.com/FOPAction The largest donation this year is from FOP FRANCE. We r...

  • Looking forward to 2014

    We have great news that even though we never reached our fundraising target last year the Research team will be unaffected. Together we raised a brilliant £106,039.77. This is due to Georgina from the Research team being on Maternity leave until after Easter and funding for this was found from else...

  • Autumn report from the Oxford FOP Research team.

    Its great to get a regular update from our research team in Oxford. The future is looking hopeful for FOP sufferers but much needed funds are still needed. Please see the following report. Autumn 2013 Report