What we do…

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From those first devastating words “You have FOP”, we’re here to support you as much or as little as you need.

We understand that people deal with things differently, and at different rates.  Just remember, you are not alone.

We connect people with FOP and their families, with others, encouraging them to joint the small yet special community.


We support and thank all our wonderful fundraisers, personally.  Without them, we wouldn’t be able to continue to support the University of Oxford’s FOP research team, and other vital projects that take us closer to finding that cure.  Every donation we receive, every person who rises to a challenge, is valued and appreciated.

We are proud to say that over 95% of fundraised money goes towards supporting our mission: to find a treatment and a cure for FOP.


We are not doctors or experts in FOP; we too are learning as we go.  We’re all on this journey together.

We’re happy to share our own experiences, but more importantly, we’re able to signpost people with FOP, and their families, to the people and services who can really help them.  We work with medical professionals both here and abroad, health and education services, and other charities.



We have held three Conference and Family Gatherings, with planning for our fourth now underway.  The event is well-respected and a date in the international FOP calendar.

We have also organised two family weekends so that children with FOP and their families can take a bit of time out to build a support network around them: nurturing friendships that will support them on their journey.



We have travelled far and wide to keep up to date with the latest FOP developments, and to work alongside the other patient organisations, all to find that cure.  Covid has paused that for the past two years, but we have continued to connect with our friends around the world through virtual channels.

So far, we have visited 23 cities and travelled over 100,000 miles, to represent FOP Friends around the globe.



We regularly meet with medical professionals, pharmaceutical companies, scientists, and other rare genetic charities to share good practice. We keep up to date with how other organisations are meeting their challenges and bring new ideas back to our charity.  We are currently in talks with the government and other policy-making organisations to get us ever nearer to enabling our patients to access a treatment.

Oliver made his speaker debut in 2018, presenting to Regeneron, receiving a standing ovation for his inspirational speech. In 2019, Oliver and Rohan took part in a patient panel for Ipsen, honestly and bravely answering questions about how FOP impacts their lives.



We have supported our families in other ways too.  We arranged for one adult with FOP to have an adaptive gaming device built to meet their needs.  We have also supported someone with kitchen adaptations.  We post messages in the forums to allow people to ask questions of a personal nature.  And we regularly ‘drop Fred an email’ when our families are concerned.

If there’s any way we can help, we do.


We work hard to raise awareness of FOP to prevent misdiagnosis.  Our #FunFeet4FOP campaign, now in its 4th year, is one way we achieve this.  The campaign has now gone international.

We speak with healthcare professionals to explain FOP.  We have produced a handbook for parents and teachers, to support them when a child with FOP starts school, and we are currently producing a journal for children and young people to help them as they learn to live with FOP.

Our “What is FOP?” video, narrated by Stephen Fry, has been viewed around the world.  More recently, Helen was on a committee for the IFOPA which produced the video “Same but Different: a look at life with FOP“.

We also produce a range of leaflets and information sheets to explain FOP.  See our Resources section to download them.


The trustees of the charity all bring a range of skills and personalities to the table.  We work together as a team to make the charity a success, and to support each other to achieve our common goal: a cure for FOP.

Because as we all know, together we are stronger. 


Dealing with the challenges one is faced with, when living with a life-limiting condition such as FOP, can be overwhelming.  And for some people, they simply don’t know where to start.

As a charity, we regularly advocate for people, liaising with a number of different healthcare professionals, educational bodies, and other agencies, to ensure that the people affected by FOP get the services they need.


At FOP Friends, we are not medical professionals, geneticists, or scientists.  We are just people who have been directly affected by someone close to us, being diagnosed with FOP.  We are constantly learning about FOP and its impact on everyday life, every day.

If people ask us a question and we don’t know the answer, we go out of our way to find it.  And then we share that knowledge with the community.

Secure Funding

Whilst our main aim is to support the FOP research team at the University of Oxford, we also understand that there are many other ways for us to support our families.

To fulfil these projects, and to cover the core costs of running a charity, we seek funding from a range of sources including grants and trusts bodies.  This ensures that when fundraisers fund-raise, an impressive 95% of the money goes directly to supporting the research.

For further information about how your money is spent, please read our Annual Report and accounts, as submitted to the Charity Commission.


Sometimes people don’t need an answer, they just want to know that someone is there who will listen.  And we do.

We endeavour to be available whenever we are needed – and that includes evening and weekends.  It may be that one of our families just wants a chat: a friend who understands.  Or maybe someone just needs a phone number.

We do whatever we can, whenever we can.