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 […]
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 […]
In the quiet village of Kuttalam, nestled in Tamil Nadu’s Mayiladuthurai district, lives a ten-year-old boy named Pragdiswaran. His story is one of resilience, hope, and the unseen struggles faced by those living with Fibrodysplasia Ossificans Progressiva (FOP)—a rare disease that turns muscle into bone. At just two and a half years old, Pragdiswaran developed […]
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 […]
Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medical science. But amidst the uncertainty it brings, there stands a powerful global force dedicated to advocacy, research, and support—the International FOP Association (IFOPA). Since its inception, IFOPA has played a crucial role in uniting the global FOP community, […]
In a country as vast and diverse as India, rare disease patients often go unnoticed, unheard, and unsupported. But for 84 families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare and disabling genetic condition, FOP Trust India has become a pillar of hope, care, and action. Through its dedicated efforts, the trust is not just […]
FOP Trust India is a lifeline for individuals and families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare and debilitating genetic condition. Every day, the trust works behind the scenes to offer unwavering support to patients across India and neighboring countries, combining compassion with commitment in ways that are truly remarkable. At the heart of […]
