Amanda Cali, Co-founder of Tin Soldiers Global, discusses how the organization helps find patients with fibrodysplasia ossificans progressiva (FOP) and other rare diseases.
FOP is a rare disorder in which skeletal muscle and connective tissue are gradually replaced by bone. This condition leads to bone formation outside of the skeleton that restricts movement. This generally becomes noticeable in early childhood, starting with the neck and shoulders and moving down the body and into the limbs. People with FOP are born with abnormal big toes which can be helpful in making the diagnosis. Trauma, such as a fall or invasive medical procedure, or a viral illness may trigger episodes of muscle swelling and inflammation. These flare ups last for several days to months and often result in permanent bone growth in the injured area. FOP is almost always caused by a genetic change at the same place in the ACVR1 gene.
Tin Soldiers Global searches for undiagnosed patients of FOP, with an emphasis on remote and less-traveled countries. Their patient search strategy begins with educating healthcare professionals on FOP, therefore increasing the likelihood of a quick and accurate diagnosis. The network of physicians connected by Tin Soldiers Global gives patients and families access to international resources.
To learn more, visit the Tin Soldiers Global website.
To learn more about FOP and other rare musculoskeletal diseases, visit https://checkrare.com/diseases/musculoskeletal-diseases/