FOP Friends is the UK’s charity dedicated to supporting people who have been diagnosed with FOP, and their families. The charity provides support, advice, guidance, signposts to other services, and perhaps most importantly – friendship. The charity was founded by the family of a little boy when he was diagnosed with FOP so truly understand what it feels like to hear the three little words: fibrodysplasia ossificans progressiva.
We organise a biennial Conference and Family Gathering,with the next one being in May 2020. We also arrange a Family Weekend in Center Parcs for children with FOP and their families.
We liaise with the UK’s FOP specialists as well as the specialists around the world.
Get in touch through the website or Facebook.