Michelle Davis, Executive Director of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), gives an overview of this rare disease as well as IFOPA’s advocacy work.



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.

Current management of the disease relies mainly on symptom management. However, Sohonos (palovarotene) was recently approved to slow bone growth in adults and children aged 8 years and older for females, and 10 years and older for males.

Ms. Davis describes the importance of consistency in advocacy groups, who are the voice for patients. The IFOPA also focuses on helping patients enroll in the four ongoing and fifth upcoming clinical trials for FOP.

To learn more, visit https://www.ifopa.org/

To learn more about FOP and other rare musculoskeletal diseases, visit https://checkrare.com/diseases/musculoskeletal-diseases/