Fibrodysplasia Ossificans Progressiva (FOP) remains one of the most misunderstood rare diseases. With only about 900 confirmed cases worldwide, public and even professional awareness is still alarmingly low. Misconceptions persist, leading to delays in diagnosis and sometimes irreversible harm. One common myth is that FOP is a form of arthritis or a post-injury complication. In […]
Treatment and research for Fibrodysplasia Ossificans Progressiva (FOP) are always changing, and 2025 will bring exciting new advancements and new hope. Even the slightest advancement in clinical trials and medication development can significantly improve the quality of life for individuals and their families afflicted by this extremely uncommon illness. The STOP-FOP trial’s entry into Phase […]
Introduction: What is IFOPA? The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a global nonprofit dedicated to supporting individuals and families affected by Fibrodysplasia Ossificans Progressiva (FOP)—a rare and disabling genetic condition. Every week, IFOPA carries out vital work in areas such as support, research, education, and awareness. Here’s a roundup of what IFOPA did […]
In a powerful step toward building early recognition of rare diseases in India, FOP Trust India conducted a special awareness session with nursing faculty and students, equipping the next generation of healthcare professionals to identify and respond to Fibrodysplasia Ossificans Progressiva (FOP) with knowledge and sensitivity. 👩⚕️ Why Nurses Matter in Rare Disease Care Nurses […]
In the small village of Vishamangalam in Tamil Nadu, a 14-year-old boy named Bharath faces one of the world’s rarest diseases—Fibrodysplasia Ossificans Progressiva (FOP). But while his condition turns soft tissue into bone, what remains unbreakable is the spirit of a loving mother, a resilient child, and a hope for a better tomorrow. The First […]
A key step in improving care for FOP patients is ensuring that medical professionals know how to spot the signs early. FOP Trust India is taking a proactive approach by partnering with nursing and medical colleges across the country to raise rare disease awareness. 👩⚕️ Why This Matters Many FOP cases are misdiagnosed due to […]
In today’s digital age, it’s easy to assume that everyone is just a tap away. But for many families living in India’s rural regions—especially those facing the challenges of a rare disease like Fibrodysplasia Ossificans Progressiva (FOP)—a letter in the mailbox can become their only connection to vital medical guidance and emotional support. ✉️ Personal […]
Every year on Rare Disease Day (Feb 28) and FOP Awareness Day (April 23), communities across the globe come together to spotlight the challenges faced by people living with rare conditions. For those living with Fibrodysplasia Ossificans Progressiva (FOP), these days are more than just symbolic—they are a call for recognition, resources, and respect. 🔍 […]
For families dealing with Fibrodysplasia Ossificans Progressiva (FOP) in India, the search for effective treatment often feels like walking an endless road. But that road now leads to hope—clinical trials for FOP are underway globally, including efforts supported by Indian doctors and researchers. Here’s what families in India need to know. 🧪 What Are Clinical […]
Fibrodysplasia Ossificans Progressiva (FOP) is one of the world’s rarest and most disabling diseases—but thanks to committed partnerships like the one between FOP Trust India and the International FOP Association (IFOPA), the future looks more connected, informed, and hopeful than ever before. 🌍 A Global Condition, A Unified Response FOP knows no borders. While it […]
