Each week, FOP Trust India works to ensure that children living with Fibrodysplasia Ossificans Progressiva (FOP) receive timely help and clear guidance. Between July 5 and 10, 2025, the team provided consultations, support, and practical solutions that eased fears and improved care for several families. On July 5, Geetika’s father shared good news—his daughter was […]
For a rare disease like Fibrodysplasia Ossificans Progressiva (FOP), early recognition can mean the difference between careful management and avoidable harm. Because FOP is so rare—affecting roughly 1 in 2 million people—most general practitioners and pediatricians may never encounter a case during their careers. That’s why educating families and frontline health workers about the early […]
While mainstream medicine continues to develop targeted therapies for FOP, many patients explore alternative approaches to ease daily discomfort and improve quality of life. These therapies may not alter disease progression, but they can offer relief, mobility support, and emotional wellness. Some families turn to physiotherapy techniques designed to increase comfort—though these must be done […]
Despite growing global awareness, many people still misunderstand what the International FOP Association (IFOPA) does—and what it doesn’t. IFOPA is not a medical clinic, not a research lab, and not a government agency. Instead, it plays an essential role as an international connector, educator, and advocate for people living with Fibrodysplasia Ossificans Progressiva (FOP). What […]
In a quiet village in Mayiladuthurai district, Tamil Nadu, lives 10-year-old Pragdiswaran, a bright boy with a powerful story of strength, struggle, and hope. His life changed at just 30 months old, when a red patch on his neck led to a local hospital referral. Suspecting cancer, doctors in Thanjavur performed a biopsy and administered […]
From the hills of Andhra Pradesh to the city streets of Bangalore, June 2025 revealed the steady commitment of FOP Trust India to provide care, connection, and compassion to those affected by Fibrodysplasia Ossificans Progressiva (FOP). This month’s patient engagement stories highlight how consistent outreach, education, and financial support make a tangible difference—especially for families […]
Early recognition of FOP symptoms remains one of the most important goals in improving patient outcomes. Misdiagnosis often leads to harmful treatments such as biopsies or unnecessary surgeries that can worsen the condition. Most people with FOP show early signs such as malformed big toes and unexplained swellings or stiffness. However, due to a lack […]
Scientific innovation continues to offer new hope to people living with FOP. In 2025, several biotech companies are testing promising therapies that could slow or even prevent heterotopic ossification (HO). Recent focus has shifted toward precision medicine. Instead of general treatments, researchers are now working on therapies that specifically target the ACVR1 gene mutation responsible […]
In an increasingly digital world, IFOPA has adapted to meet the needs of the global FOP community by building accessible, technology-driven support tools. Through virtual education programs, translation services, and digital health guides, IFOPA empowers families and professionals to better understand and manage FOP, no matter where they live. One of its most useful digital […]
Every week, families affected by Fibrodysplasia Ossificans Progressiva (FOP) reach out seeking answers, reassurance, and support. Behind every name is a journey of courage, uncertainty, and a desire for better care. This week’s updates reflect how consistent medical support, awareness, and timely intervention can make a significant difference in the lives of those living with […]
