Many people still misunderstand Fibrodysplasia Ossificans Progressiva (FOP). Some believe it’s a form of arthritis or the result of injury. Others confuse its symptoms with tumors or infections. These misconceptions lead to dangerous decisions, including unnecessary surgeries and misdiagnoses. FOP is not caused by trauma. It is a genetic condition rooted in a mutation of […]
Advocating for a rare disease like FOP requires consistency, compassion, and creativity. In recent weeks, field teams have conducted a series of impactful outreach activities across southern India. From nursing colleges to hospital corridors, the message has been clear: awareness saves lives. One major milestone was the awareness session held at Pravagam AHS Nursing Training […]
The International FOP Association (IFOPA) champions global FOP support through emotional, educational, and research-driven initiatives. It doesn’t just serve as a medical resource; it stands as a global connector. Families from over 60 countries have found guidance, friendship, and essential resources through this organization. From its humble origins in 1988, IFOPA has blossomed into an […]
In a modest home in Bangladesh, a two-and-a-half-year-old boy named Waziuzzaman Muhammad has begun a journey few could imagine. As the firstborn child of Mr. Md Helal and Mrs. Nahida Khamom, Waziuzzaman seemed like any other healthy toddler. But in May 2023, a sudden and unexplained lump on the back of his neck changed everything. […]
On June 16, a visit was made to Amara Hospital to meet with Dr. Vrisha, who had just returned from leave. Updates were shared about recent home visits—highlighting Pranav’s successful post-surgery recovery and the mobility challenges faced by Kanish at home and in school. Details of the FOP awareness sessions conducted over the past two […]
Fibrodysplasia Ossificans Progressiva (FOP) remains one of the most misunderstood and misdiagnosed rare diseases. Because the condition is extremely rare, many healthcare professionals and community members confuse it with more common illnesses. Some mistake FOP for arthritis because of the joint stiffness and pain during flare-ups. Others assume it develops after trauma or infection and […]
FOP research is advancing steadily, bringing hope to patients and families worldwide. In 2025, one of the biggest developments is the Phase 2 trial of the STOP-FOP study, which focuses on the drug saracatinib. Originally developed for other conditions, saracatinib has shown promise in reducing flare-ups and slowing abnormal bone growth in FOP. Another promising […]
The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, one of the first individuals diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). From a small patient-led initiative, IFOPA has evolved into a global organization that champions FOP awareness, supports groundbreaking research, and empowers patients and families around the world. FOP is one of the […]
Day One: Compassion in Action (June 9, 2025) The week began with patient check-ins. Ms. Asha Shetty was healing from jaw pain after using a gel prescribed by Dr. Rajesh. Samed Ali had recovered from a fever. Lashmamma, who completed a course of antibiotics, reported less gum pain. Meanwhile, Pranav, a recent surgery patient, was […]
A Brave Heart from Chengannur In the quiet town of Chengannur in Kerala’s Alappuzha District lives 10-year-old Devanda. She shows incredible courage while facing Fibrodysplasia Ossificans Progressiva (FOP), a rare and challenging genetic condition. Her story highlights the power of early diagnosis, strong community support, and her family’s unwavering care. Diagnosis That Changed Her Life […]
