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 […]
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 […]
In the world of FOP care, early intervention during a flare-up can mean the difference between comfort and complication. This week, multiple families contacted FOP Trust India as their children experienced painful swellings—a classic sign of a flare-up. With quick coordination, the Trust arranged consultations with Dr. Vrisha Madhuri and ensured timely medication. Ashik and […]
Over the past week, FOP Trust India continued its tireless efforts to ensure that every family affected by Fibrodysplasia Ossificans Progressiva (FOP) receives timely, expert care and the emotional support they need. From hospital visits to remote consultations, each day brought a mix of challenges, coordination, and hopeful outcomes. Hospital Collaboration in Chennai The week […]
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 […]
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 […]
For most people, Fibrodysplasia Ossificans Progressiva (FOP) is an unfamiliar word—complex, obscure, and distant. But for families living with it, FOP is a daily reality that affects every aspect of life. Thankfully, community-led efforts, international collaboration, and generous individuals are changing what it means to live with this condition. At the heart of this change […]
Fibrodysplasia Ossificans Progressiva (FOP) may be one of the rarest diseases in the world, but for the families affected, its impact is painfully real. Every flare-up brings uncertainty, every misdiagnosis delays critical care, and every untreated symptom adds to irreversible damage. Yet, amidst all this, a growing network of dedicated organizations like FOP Trust India […]
