This week, the FOP Trust field team balanced medical support with family assistance. Key highlights include: These actions reflect the Trust’s broader mission: not only providing medical guidance but also ensuring families feel supported in education, livelihood, and daily resilience. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
Young Varsa from Madurai has been bravely navigating her FOP journey. Recently, she faced swelling in her neck, which caused pain and discomfort. Her grandfather, a strong advocate for her care, reported the situation to FOP Trust. With support from Dr. Vrisha Madhuri, Varsa received medication that eased her pain. While the swelling has not […]
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/
One of the most powerful lessons of August was the importance of following medical protocols. Families like Helal’s in Bangladesh and Mayashree’s in Manipur showed how local doctors can safely deliver therapies when guided by expert instructions. Protocols prevent risky decisions like unnecessary surgeries or biopsies. They also ensure flare-ups are managed quickly, reducing pain […]
The International FOP Association (IFOPA) continues to connect families across borders with the tools they need to manage daily challenges. Its global resources—emergency cards, flare-up protocols, and patient handbooks—help families feel prepared even in times of uncertainty. This month, families like Helal Wazimuddin’s in Bangladesh benefited directly. Guided by IFOPA protocols and supported by FOP […]
The field team worked on several key initiatives during the last week of August: These actions show how fieldwork goes beyond individual care—building networks that strengthen early diagnosis, referrals, and community awareness. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
For Mayashree from Manipur, every treatment is a step forward in her fight against FOP. Earlier this month, she received her second dose of Pamidronate at the Regional Institute of Medical Sciences, Imphal. Unlike her first experience, this session went smoothly without complications. Her father expressed deep gratitude to Dr. Vrisha Madhuri, the local medical […]
Despite growing awareness, myths around FOP still cause harm. Some believe it is arthritis, while others think it develops after injuries. In truth, FOP is a genetic condition caused by a mutation in the ACVR1 gene, leading soft tissues to transform into bone. These misunderstandings often push families toward dangerous treatments like biopsies or surgeries, […]
Global Research Momentum Fibrodysplasia Ossificans Progressiva (FOP) remains one of the rarest and most complex genetic conditions, but research around the world is gaining momentum. Scientists continue to focus on the ACVR1 gene mutation, which causes muscles, ligaments, and tendons to turn into bone. By studying how this mutation activates unwanted bone growth, researchers are […]
Connecting Families to Trusted Knowledge The International FOP Association (IFOPA) is more than just a global organization—it is a lifeline for families navigating the uncertainty of Fibrodysplasia Ossificans Progressiva (FOP). Its mission is clear: provide trusted, practical resources that help families make safer decisions every day. From emergency medical cards to flare-up management protocols, IFOPA’s […]
