FOP Friends’ Conference and Family Gathering

Friday 10th  – Sunday 12th May 2024

We’re excited to announce that places to attend the conference are now FREE for those with FOP/POH and their immediate family!

First, Do No Harm: Expert reflections on a rare bone disease

Tuesday 13th February 2024

Medics4RareDiseases and FOP Friends, in collaboration with the Hunterian Museum at the Royal College of Surgeons of England, are hosting an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in Fibrodysplasia Ossificans Progressiva (FOP).

Come and find out how patient advocacy can change the course of rare genetic conditions and how basic principles of good clinical care can make all the difference to your rare patients both now and in the future.

FOP is just one example of a rare genetic bone condition that has been familiar to medicine for hundreds of years but is not familiar to the average healthcare professional because it impacts one in a million people.

Also like many rare conditions, what we do know about FOP is largely thanks to patients and families who have given their time, stories, samples and bodies to the pursuit of improving the outlook of those with FOP in the future.

You will hear patient stories from the 18th Century to the present day. Talks by people who live with FOP as well as advocates and clinicians who have been pivotal in improving life for those living with FOP today and developing treatments in the future.

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

Covid continues to be a real concern for those living with FOP, POH and many other health conditions.  Click here for the latest medical advice for people living with FOP, from the International Clinical Council for FOP.