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 […]
Go behind the scenes of this year’s Drug Development Forum When Dan Perrien attended his first FOP Drug Development Forum (DDF), he met two young children with fibrodysplasia ossificans progressiva (FOP). He watched them run and play like any other children would — while the adults in the room were on high alert to make […]
Meet 12-year-old Raina When Raina and her friends created a club called “The Underpuppies,” they decided on just one requirement: You have to be genuinely kind to join. To enforce that requirement, they developed a test. The current Underpuppies stage a situation where the prospective member has to help someone in need or be willing […]
After falling this spring, Jordyn’s arms locked up more. At night, her arms wouldn’t touch the bed when she laid flat on her back, and she could no longer sleep on her side because of the pain the pressure put on her arms. None of the pillows or towels she tried helped her find a […]
CRISPR-Cas9 is widely used to edit the genome by studying genes of interest and modifying disease-associated genes. However, this process is associated with side effects including unwanted mutations and toxicity. Therefore, a new technology that reduces these side effects is needed to improve its usefulness in industry and medicine. Now, researchers at Kyushu University in […]
