From the hills of Andhra Pradesh to the city streets of Bangalore, June 2025 revealed the steady commitment of FOP Trust India to provide care, connection, and compassion to those affected by Fibrodysplasia Ossificans Progressiva (FOP). This month’s patient engagement stories highlight how consistent outreach, education, and financial support make a tangible difference—especially for families who lack access or resources.
One significant milestone involved Sivaji, a suspected FOP patient from Kummarapalli near Madanapalle, Andhra Pradesh. After being referred by doctors at Apollo Hospital in Chennai, Sivaji underwent a consultation with Dr. Vrisha Madhuri. Although he lacked the hallmark big toe deformity, X-rays revealed signs of myositis. Dr. Vrisha recommended genetic testing. Aware of his financial constraints, FOP Trust India covered the cost. Sivaji, despite his economic hardship, offered to donate a symbolic contribution of ₹2,000—a gesture that reflects the dignity and gratitude of families served.
Meanwhile, patients like Geetika from Nellore and Lakshya Kos from Assam accessed both in-person and online care. Geetika faced jaw stiffness and received oral care advice and emergency medication guidance from Dr. Vrisha. FOP Trust paid for her consultation, while her family managed the cost of other treatments. Similarly, Lakshya received timely online support for a flare-up.
Field visits remained a vital part of the work. A home visit was made to Kanish, whose mobility challenges require household modifications and customized footwear. FOP Trust also attempted to trace Mokshith, a newly diagnosed child, through on-ground inquiries in a Bangalore neighborhood.
In parallel, FOP awareness efforts continued with outreach to nursing colleges and professional networks. The month concluded with the case of Vansh, who experienced a fall. His family couldn’t afford the consultation, so FOP Trust covered the cost to ensure he received immediate care.
These stories show how access, empathy, and timely action can change lives. From funding diagnostics to delivering pamphlets, from remote villages to virtual consultations, FOP Trust India ensures no patient is left behind.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
