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 £31,853.26

2014 Conference and Family Gathering

Radisson Blu, Manchester

Book Online

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

View all news
  • 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, ...

  • Latest fundraising

    A massive thank you to fopfrance for another great donation of 5,000 euros. Well done Rachel Winnard on raising funds by doing no make up selfie in your pyjamas fundraiser. People can still take part and donate on her virgin giving page Rachel's family have also been very brave raising funds whilst...