15/04/2026
🦴 FOP: When the Body Grows a Second Skeleton
Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic disease affecting approximately 1 in a million people.
FOP is the only known disease where one body system transforms into another, causing bone to grow where it shouldn't and forming a "second skeleton" that restricts movement over time.
Know the signs:
👣 Malformed big toes are a hallmark of FOP—bent in the classic mutation, or longer, shorter, normal, or even missing in variant forms
💥 Unexplained swellings that resemble tumors can appear as early as infancy, either spontaneously or after an injury
⚠️ If FOP is suspected, a biopsy should NEVER be performed—it can cause irreparable harm.
🩺 Diagnosis is still taking too long:
Half of individuals with FOP are initially misdiagnosed, often with cancer. Even today, reaching a correct diagnosis takes an average of 2–2.5 years.
🌎 Fewer than 1,000 of the estimated 8,000 cases worldwide are currently diagnosed. Organizations around the world, including Tin Soldiers, are working to identify and diagnose people living with FOP.
Raising awareness among healthcare professionals is critical. Swipe through to learn more 👉
📖 ifopa.org/symptoms | ifopa.org/misdiagnosis | ifopa.org/fop-hcp-education
🌍 tinsoldiers.org | ifopa.org/international_presidents_council
