FOP Trust continues to rely on IFOPA’s global expertise to guide families through flare management, emergency care, and long-term support. 🌍 This Week’s Highlights: IFOPA’s resources remain a backbone in ensuring every family receives globally informed care, right here in India. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/
This week, FOP Trust India built on the IFOPA vision of connecting patients to care by expanding its hospital partnerships and doctor outreach. Official FOP Trust letters were handed over to: These outreach efforts ensure that doctors who encounter rare FOP symptoms can connect patients immediately to specialized resources and FOP Trust’s network. Takeaway: When […]
Across the world, the International FOP Association develops vital patient-support resources. This week, FOP Trust India adapted IFOPA’s “Understanding FOP” and “Emergency Preparedness Cards” for local use, translating them into Tamil and Hindi for easier sharing with families during hospital consultations. These tools help parents and local doctors communicate better, reducing misdiagnosis and ensuring immediate […]
The International FOP Association (IFOPA) has been strengthening its global connections through education, research sharing, and mentorship. These partnerships are now reflected directly in India’s on-ground efforts, where FOP Trust integrates global standards into local healthcare systems. Recent outreach to pediatricians and hospitals across Tamil Nadu and Karnataka echoes IFOPA’s commitment to early recognition and […]
The International FOP Association (IFOPA) continues to guide global rare disease communities with practical, patient-centered tools. In India, these resources have become part of daily care—from flare-up protocols to emergency cards and self-help guides. Families like Shraya’s in Nepal and Akshat’s in Rajasthan used IFOPA’s translated guidelines this month to manage flare-ups safely. These resources […]
The International FOP Association (IFOPA) continues to strengthen global collaboration through partnerships with research centers and rare disease networks.These initiatives are helping accelerate clinical trials, improve data accuracy, and ensure better representation from developing countries like India. Through shared registries and virtual consultations, IFOPA enables doctors to access the latest FOP Treatment Guidelines — ensuring […]
Families living with FOP often struggle with uncertainty, especially during flare-ups. The International FOP Association (IFOPA) bridges this gap by offering global support tools that guide safe decisions. From emergency medical cards to step-by-step flare-up protocols, IFOPA resources are designed to prevent harmful actions like biopsies or nerve blocks. In September, families like Shraya’s from […]
The International FOP Association (IFOPA) continues to serve as a lifeline for families worldwide. Its global support network provides practical tools, emergency guidelines, and educational resources that families can trust in moments of uncertainty. In September, families like those of Akshat from Rajasthan and Helal from Bangladesh relied on IFOPA’s flare-up protocols to guide safe […]
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 […]
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, […]
