We are on a quest to find those suffering with an ultra rare condition called Fibrodysplasia Ossificans Progressiva (FOP). With an incidence rate of approximately 1 person in every 1 million births, the expectation is around 7500 cases of FOP globally with only about 800 to 900 diagnosed. This means there are lots of people living in pain and isolation with no connection to resources. If you think you know of someone with FOP please contact

FOP is a devastating, progressive condition that slowly turns muscle, ligaments and tissue into bone ‒ sending its victims into a spiral towards complete immobility; as extra bone grows, locking joints and rendering movement near impossible.

To gain a better understanding of one of the world’s most rare diseases, take time out to watch the story of real life ‘Tin Soldiers’. It is a deeply personal story of people afflicted and the search to identify those still living in the dark – victims whose symptoms defy the understanding of those around them. It is also a compelling tale of courage, set against the backdrop of medical science.