On this year’s Rare Disease Day we would like to shine a light on fibrodysplasia ossificans progressive, or commonly shortened to FOP. It is an extremely rare disease which is only seen in 1 in 2 million people (or roughly the population of Nebraska) and causes soft tissue, such as muscle and tendons, to gradually form into bone.
It’s no secret that our FOP experience is one of the most challenging experiences we have built to date, so it was our privilege to speak with Carli again, one of the contributors to our FOP experience, to see how she is doing since we launched our experience in 2023.
In our latest Meet the Patient podcast, we get a unique insight into living with FOP from Carli, who also works on educating and inspiring people through Instagram and her blog. Carli shares with us how living with FOP impacts on her relationships, career, and elements of the condition she is less likely to discuss with others.
Real Patient Insights
It is the real stories and experiences shared by contributors such as Carli, combined with our three elements, that help deliver an immersive experience to help participants better place patients at the heart of what they do.
Get in touch to learn about how you can try the A Life in a Day experience for yourself.
