Downloadable resources for patients, families and friends
Here to help…
When Chris and Helen received the diagnosis in 2009 that their son had FOP, the surgeon gave them those three fateful words ‘fibrodysplasia ossificans progressiva’ on a torn-off piece of paper and sent them on their way. The only advice they were given was, so long as Oliver didn’t play rugby, he’d pretty much be ok. They had no idea of what lay ahead of them. Fast forward to 2024 and they, along with the other trustees, want to make sure no other parents have to go through what they did.
At FOP Friends, we truly understand from first-hand experiences, how it feels to be given that diagnosis. And while we cannot do anything to change that news, we do hope that we are able to provide families with trusted information, in one place, so that families can find answers to their questions in their own time and in their own way. We hope these leaflets will go some way to helping families through the first weeks and months.
These resources are free to download, to support people with FOP, their families, health professionals and other people who are interested in learning more about FOP. If you would like to receive all the files as a Zip file, please use the Contact Us form to request it.
This information is based on what we are regularly asked for as a charity; what other families say they wish they’d been given when they received their diagnosis many years ago; and what Chris and Helen wished they’d had to support them in those dark, early days, when they were told their baby had FOP.
If there are any questions left unanswered, please just reach out and ask. We are stronger together.