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.

Well done Sinead climbing Mount Kilimanjaro for a cure

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 £31,853.26

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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  • Team Lighthouse (Ellie & Rohan): Raise £3930 for FOP

    We would all like to thank a fantastic young lady Ellie Tulloch and her equally fantastic Gran, Rohan Beyts,who gave up two weeks of their summer holiday to raise money for FOP by walking from Edinburgh to Rohan's lighthouse just outside Aberdeen, a total of 142 miles. They managed to raise an incr...

  • Brilliant support from Tom and friends

    Thank you to all our wonderful families, friends and colleagues for your amazing support and generosity for The Edinburgh Marathon to find a cure for Fop. Tom charged over the finish line after 3 hours 15 minutes. Pretty amazing for a first marathon. Thank you Imi for your brilliant support to Tom a...

  • 2014 FOP Conference & Family Gathering A Resounding Success!

    Thank you to everyone who attended or was involved in making the 2014 UK FOP Family Gathering a great success. Twelve years after the first ever UK event, FOP Action held a conference and family gathering for families from across the country and the globe. The event was organised by FOP Friends, ...