Living with FOP
Those three words: You Have FOP…
Being given the diagnosis of FOP shatters your world. It takes time to process. There are no rules on ‘how long’ it should take. There are feelings, emotions, and words you don’t understand… You have no idea where to turn.
You will have a thousand questions, and hopefully, our website will start to answer some of them.
Once those early days pass, you may want to reach out to others who understand where you are now. They have also managed to come through the other side. The diagnosis will never change, but you will learn that there is hope and a community of people who will be there to support you on your journey.
Living with a condition such as FOP brings many challenges to daily life. Things that most people take for granted will require additional thought and planning, but people living with FOP prove on a daily basis that most challenges can be met head on.
There is a strong and supportive FOP community out there, and ready to welcome you in. When you are ready.
Below you will find some information that will help you live with FOP.
The ICC Medical Guidelines
Read and download the medical guidelines from the International Clinical Council for FOP.
The Team at RNOH
The UK’s FOP specialist team is based at the Royal National Orthopaedic Hospital, London.
Grants for Families
Links to charities, including the L.I.F.E Award, which can provide financial support.
Dental Health
Find information about preventative care and contact details for FOP dental specialists.
Grants for Families
Links to charities, including the L.I.F.E Award, which can provide financial support.