Sivaji, a young man from Andhra Pradesh, has been navigating the uncertainty of a suspected FOP diagnosis. His case reflects both the challenges of rare disease detection and the power of persistence in seeking answers. After developing symptoms that raised concerns, Sivaji underwent tests and X-rays. Unfortunately, his earlier reports did not reveal a clear […]
September was a month of both outreach and organization for FOP Trust India. At the community level, the Trust deepened its partnership with the Lions Club in Vellore. During a meeting on September 19, team members spoke about FOP, distributed pamphlets to club members, and later joined a welfare program to raise public awareness. These […]
FOP research has made exciting strides lately. Several drugs under development show promise in slowing or preventing heterotopic bone formation (HO) and improving quality of life. Here’s what’s new: 🔬 Key Investigational Drugs ⚠️ What These Mean for Patients 🔍 Looking Ahead Research continues at a fast pace. With each trial, we gain better understanding […]
Awareness is one of the most powerful tools in the fight against Fibrodysplasia Ossificans Progressiva (FOP). In September, new partnerships and local initiatives showed how collaboration can spread knowledge and protect patients from harmful practices. Local Partnerships with Global Impact Discussions with the Lions Club Vellore moved forward, with a plan to sign an MoU […]
For families living with Fibrodysplasia Ossificans Progressiva (FOP), isolation often feels like the greatest challenge. With so few cases worldwide, many parents worry they are alone in their journey. The International FOP Association (IFOPA) bridges this gap through global support tools designed to make reliable information accessible anywhere. Practical Tools for Daily Care From emergency […]
At just 10 years old, Sanskriti Gupta from Uttar Pradesh is showing remarkable strength as she learns to live with Fibrodysplasia Ossificans Progressiva (FOP). Her journey reflects the resilience of many children and families navigating the daily challenges of this rare condition. A New Flare-Up On September 8, 2025, Sanskriti developed a painful swelling in […]
The second week of September showed how much progress can be made when families, doctors, and partners come together for FOP care. From patient consultations to partnership discussions, every step reflected teamwork and commitment. Patient Consultations On September 8, Sanskriti Gupta had an online consultation at Amara Hospital after developing a new swelling in her […]
Living with Fibrodysplasia Ossificans Progressiva (FOP) often feels overwhelming for families. The disease is rare, unpredictable, and every flare-up brings fear of what might happen next. But clear, written protocols transform this uncertainty into confidence. Why Protocols Matter Families often face split-second decisions—whether to go to the hospital, which medicines to give, or how to […]
The first week of September brought important lessons about managing FOP flare-ups with safe, evidence-based care. Every consultation reinforces that managing FOP is not just about medication—it’s about making the right decisions at the right time, guided by expertise and trust. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
The International FOP Association (IFOPA) plays a crucial role in connecting families to global knowledge that saves lives. Its emergency cards, flare-up management guides, and doctor toolkits provide clarity in moments of uncertainty. In September, families across India and Nepal continued to rely on these resources. For example, when Ashik from Chennai consulted a rheumatologist, […]
