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.
* * * Help us give light and hope to everyone living with FOP and POH this Christmas * * *
Make a donation in honour of someone special and help us continue our work. Every Light is Hope.
Make a gift and watch our virtual tree shine brighter.
What is FOP?
FOP is one of the rarest and most disabling genetic conditions known to medicine, affecting around 1 in a million births.
FOP is characterised by shortened big toes and unusual swellings across the body. It causes soft tissues, like muscles and tendons, to gradually turn into bone. It is the only condition known to medicine where one organ turns into another. This gradual process, known as heterotopic ossification, significantly restricts mobility and impacts daily life.
There are ongoing research projects, focused on understanding the underlying mechanisms of FOP and developing potential therapeutic interventions to improve the lives of those affected.
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
Living with FOP presents a unique and challenging journey. While there is currently no cure, individuals with FOP and their families navigate this complex reality with resilience, seeking support, information, and advancements in research to improve quality of life and pursue potential treatments.
we are committed to providing support, information, and updates on ongoing research efforts for those affected. We are also able to signpost to many other wonderful organisations who can can offer other services.
With the FOP community by your side, you are never alone.
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.
The International Clinical Council for FOP
The International Clinical Council (ICC) for FOP was established in 2017 to create a global voice for the best practice in clinical care and research for people who are living with FOP.
The ICC is an autonomous and independent group of 21 internationally recognised clinician experts from 14 different nations, including the UK.
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