The FOP Trust field team made significant strides in expanding its referral network during July 2025. Key outreach efforts included visits to Tamil Nadu State Children’s Hospital in Chennai and Indira Gandhi Children’s Hospital in Bengaluru. These hospitals responded positively and agreed to refer children suspected of having FOP to the Trust. In addition to […]
Living with FOP presents daily risks, but many of these can be managed with small, strategic tools. In July, FOP Trust India focused on equipping families with essential safety items like helmets and spirometers—tools that may seem minor, but make a significant impact on quality of life. As mobility changes, children with FOP face higher […]
July brought important reminders about the urgency and effectiveness of early flare-up management for FOP. With several children—including Ashik and Devananda—experiencing painful swellings, the month’s learnings centered on fast intervention and holistic preventive care. The FOP Trust responded quickly by arranging online consultations with Dr. Vrisha Madhuri, who prescribed medications tailored to each case. Early […]
While IFOPA is a global organization, its greatest strength lies in how its tools make a difference at the local level. Through translated guides, emergency medical information, and patient handbooks, families across India are better equipped to manage the rare condition of Fibrodysplasia Ossificans Progressiva (FOP). In July, several families in India used IFOPA’s resources […]
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 […]
July 2025 was a landmark month for FOP Trust India—from expanding medical collaborations to supporting patient care across the country. Every phone call, consultation, and hospital visit added to the growing momentum of India’s FOP response. Strengthening Patient Care Throughout the month, FOP Trust facilitated over 15 consultations—both online and in person—with Dr. Vrisha Madhuri. […]
From January to July 2025, FOP Trust India has made remarkable strides in its mission to support families living with Fibrodysplasia Ossificans Progressiva (FOP). Here’s how their work is transforming lives across India: Medical Support: Over 100 patient consultations were coordinated, with many families receiving emergency guidance during flare-ups. Consultation fees, medications, and even genetic […]
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. […]
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. […]
