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.

Covid-19 Update

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

What is FOP?

FOP is one of the rarest and most disabling genetic conditions known to medicine.  It affects around 1 in 1.4 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 Fibrodysplasia Ossificans Progressiva (FOP) and related conditions 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.

However, despite FOP, people affected by the condition continually find ways to adapt to their ‘new normal’ and live successful and fulfilled lives.  Students with FOP leave school at 18 with qualifications, with many going on to further education and having successful careers.

POH Kaplan Rion

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.

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Help by Donation

FOP Friends is a fully registered charity in England, Wales and Scotland.
Every donation makes a difference: no matter how big or small.

Your donation can change the future for all our children who are living with FOP.

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