Pranav, a young boy from Salem, Tamil Nadu, has been living with Fibrodysplasia Ossificans Progressiva (FOP)—a condition that turns soft tissue into bone, limiting movement and posing severe health risks. In recent months, his journey took a critical turn when he experienced multiple falls that resulted in a head injury, leading to neurosurgery. By July […]
Patient Story: Sanskriti’s Strength – A Young Voice of Hope from Uttar Pradesh In a quiet town in Uttar Pradesh, 10-year-old Sanskriti Gupta is facing one of the world’s rarest diseases with quiet strength and a brave heart. Diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), Sanskriti’s life changed in ways her family could never have imagined. […]
Managing Fibrodysplasia Ossificans Progressiva (FOP) goes far beyond responding to flare-ups. Ongoing, consistent follow-up care is a critical element in maintaining patient health and minimizing complications. Recent updates from FOP Trust India show how essential this is. Patients like Devananda and Ashik weren’t just treated once—they received follow-up consultations with Dr. Vrisha Madhuri, had their […]
The International FOP Association (IFOPA) continues to be a vital hub for individuals and families living with Fibrodysplasia Ossificans Progressiva (FOP). As a worldwide nonprofit, its mission focuses on empowering patients through education, research, and direct support. This week, we spotlight how IFOPA builds bridges between continents and clinics to serve the FOP community better. […]
When thinking about FOP treatment, most people focus on flare-ups and bone growth. But oral health is just as important—especially since jaw stiffness and difficulty opening the mouth are common complications in patients with FOP. Routine dental procedures like extractions or deep cleanings can trigger flare-ups if not done carefully. That’s why patients must work […]
The International FOP Association (IFOPA) offers global support to FOP families by creating strong networks that transcend borders. From its roots in the United States, IFOPA has grown into a lifeline for families in over 60 countries, offering hope, education, and vital resources for those affected by Fibrodysplasia Ossificans Progressiva (FOP). IFOPA’s role in this […]
Every journey with Fibrodysplasia Ossificans Progressiva (FOP) is filled with quiet moments of courage—whether it’s a child leading her classroom, a family contributing despite hardship, or the community helping track down a lost contact. In July 2025, the FOP Trust India team encountered three such stories that reflect resilience, kindness, and deep commitment to care. […]
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 […]
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 […]
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 […]
