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, […]
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 […]
