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Ifopa Global Support Tools That Connect Families Everywhere

Leo Migdal
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ifopa global support tools that connect families everywhere

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. From emergency medical cards to flare-up management protocols, IFOPA equips families with resources they can use immediately. These tools provide clear instructions for doctors unfamiliar with FOP and give caregivers confidence during emergencies. In India, families like Akshat’s from Rajasthan and Helal’s from Bangladesh have already benefitted, using IFOPA’s resources to avoid harmful procedures and ensure safe treatment.

But IFOPA’s impact goes beyond resources. Its global support connects families across borders through webinars, patient meetings, and online networks. These platforms allow parents to learn from one another, share coping strategies, and find reassurance in a community that understands their struggles. For newly diagnosed families, this sense of connection transforms fear into knowledge and hope. By collaborating with national partners like FOP Trust India, IFOPA ensures its tools don’t just remain global—they reach the local level where families need them most. Whether it’s a translated guide for rural communities or a protocol shared with a local doctor, these efforts make life safer for children living with FOP.

Through global support, IFOPA proves that no family is truly alone. Its resources and community network bring knowledge, safety, and solidarity into homes worldwide. This illustration was co-created with people living with FOP. According to the International Clinical Council (ICC) Guidelines, a multidisciplinary approach is essential to providing optimal patient care and lessening the chance for potentially harmful interventions.1 Regardless of the health consideration at hand, FOP will impact the types and ways in which care is given. Providers of all types and levels of experience should consult with an FOP expert when treating a patient with FOP.

The International FOP Association (IFOPA) and ICC websites feature critical medical information and guidelines on the management of FOP. The ICC is an independent group of FOP clinical experts made up of 21 internationally recognized physicians from 14 countries. 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 Trust India, his son received Pamid therapy safely at a local hospital.

This collaboration shows how international knowledge, when applied locally, protects patients and gives families the confidence to move forward. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/ Wordly launches Voice Transcripts for AI Dubbing — Learn More The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a medical nonprofit dedicated to supporting families affected by Fibrodysplasia Ossificans Progressiva (FOP), a rare genetic condition. The organization hosts a variety of virtual sessions every year including the Annual FOP Family Gatherings, Ongoing Education Programs, and Family Welcome Calls. The Family Gatherings garner an average of 450-500 participants every year, while the Welcome Calls and other smaller sessions see an average of 5-15 participants.

IFOPA struggled to engage around 40% of its audience members who don’t speak or understand English. The gap impeded their mission to provide comprehensive support and a sense of belonging to all families facing FOP. As a medical nonprofit, IFOPA is very budget-conscious. They could not afford a costly translation tool or human interpreters. They needed a solution that was affordable, easy to set up and use, and provided accurate audio and written translation in numerous languages.

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