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.

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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FOP Friends Conference and Family Gathering 2020


FOP Friends’ is holding its 4th Conference and Family Gathering at the Manchester Radisson Blu Airport Hotel on Saturday 16th May 2020.

As in previous years, there will be presentations from the UK and International FOP experts.  People living with FOP will be able to make a clinical appointment to meet with the FOP specialists.  There will also be a FriendZone for children and young people to hang out, during the event.

A Welcome Drinks Evening on Friday 15th May and a Family Dinner on Saturday evening will ensure there are plenty of opportunities for the families to get together, catch up with old friends, and of course meet new people who are all sharing the same journey.

For more information, visit the Conference and Family Gathering 2020 Page.

We look forward to seeing you all there!



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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