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Finding a treatment and a cure for FOP

FOP Friends was established to raise money
and awareness for the rare genetic condition
Fibrodysplasia Ossificans Progressiva (FOP)

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Who are FOP Friends?

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What is FOP?

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Living with FOP

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You Can Help

Our Mission

A cure is near, but we need to keep research funded to perfect it in time for those with Fibrodysplasia Ossificans Progressiva (FOP).  Hope rests with people like you, people who care.

FOP Friends Conference and Family Gathering 2022: Booking Now Open

We are delighted to announce, after careful consideration, we are holding our Conference and Family Gathering at the Manchester Radisson Blu Airport Hotel, on Saturday 21st May 2022.

We can’t wait to see you all there!

April is FOP Awareness Month!  #FunFeet4FOP

Global FOP Awareness Month is is celebrated throughout the month of April.  In recognition of the day the discovery of the FOP gene was discovered, we celebrate #FunFeet4FOP on 23rd April every year.

Help us to raise awareness of FOP by sharing photos of your wacky and wonderful toes!  What will your feet wear?

What is FOP?

FOP is one of the rarest and most disabling genetic conditions known to medicine.  It affects around 1 in a million births.  It is characterised by shortened big toes and unusual swellings across the body.

Who are FOP Friends?

FOP Friends is the UK’s only charity which is dedicated to supporting people living with FOP and their families.  We actively fundraise to support the research into a treatment and a cure for FOP. It is run by families which are directly affected by FOP.

FOP Friends’ aim is to further research into FOP by supporting current and future research projects.  Our goal: to cure FOP.

Living with FOP

FOP is a disabling condition that can significantly impact a person’s life.  Progression of FOP is extremely variable, with no way of knowing when a flare-up is going to occur.  Although there is no current treatment for FOP, there are a number of precautions people living with FOP can take to help manage the condition and potentially lessen the risk of a flare-up or fall-out from FOP.

What is POH?

Progressiva osseous heteroplasia, or POH, is often considered a ‘sister’ condition of FOP, due to some similarities the conditions share.  It is even rarer than FOP so there are even fewer families in the UK affected.  The specialists who treat our patients with FOP also care for those with POH.

We welcome those who are affected by POH to our small but special community.

Covid-19 Update

Click here for the latest medical advice for people living with FOP, from the International Clinical Council for FOP.

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