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Take Action Ifopa International Fibrodysplasia Ossificans

Leo Migdal
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take action ifopa international fibrodysplasia ossificans

1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as... 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 Nepal benefitted from these tools, using them to share accurate guidance with local doctors. Beyond resources, IFOPA connects families through international webinars, family networks, and online communities, ensuring no family feels isolated. By combining knowledge with connection, IFOPA gives families both clarity and confidence. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/ Accelerate Discovery with the World’s leading Science, Technology and Innovation Marketplace

Connect with the world’s biggest companies, everyday Share your expertise and experience with global businesses and charities to accelerate innovation impact Answers to common questions about the Innocentive It’s our mission to change the world, one idea at a time. We would love you to join us. By: Madaline Spencer| Published on: Jun 18, 2024

Michelle Davis, Executive Director of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), gives an overview of this rare disease as well as IFOPA’s advocacy work. FOP is a rare disorder in which skeletal muscle and connective tissue are gradually replaced by bone. This condition leads to bone formation outside of the skeleton that restricts movement. This generally becomes noticeable in early childhood, starting with the neck and shoulders and moving down the body and into the limbs. People with FOP are born with abnormal big toes which can be helpful in making the diagnosis. Trauma, such as a fall or invasive medical procedure, or a viral illness may trigger episodes of muscle swelling and inflammation.

These flare ups last for several days to months and often result in permanent bone growth in the injured area. FOP is almost always caused by a genetic change at the same place in the ACVR1 gene. Current management of the disease relies mainly on symptom management. However, Sohonos (palovarotene) was recently approved to slow bone growth in adults and children aged 8 years and older for females, and 10 years and older for males. Ms. Davis describes the importance of consistency in advocacy groups, who are the voice for patients.

The IFOPA also focuses on helping patients enroll in the four ongoing and fifth upcoming clinical trials for FOP. The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) continues to be a lifeline for families navigating this rare and complex condition. Their online library offers practical, patient-tested resources—covering everything from flare-up management to oral care tips—that help families feel more prepared for everyday challenges. In August, several Indian families benefited from IFOPA’s translated emergency care cards and home safety checklists. These tools ensured that parents could act quickly when new symptoms appeared and share accurate information with local doctors. FOP Trust India regularly connects newly diagnosed patients with IFOPA’s learning hub, allowing them to access credible, research-backed advice.

For many, this bridge between global knowledge and local needs has reduced uncertainty and prevented harmful treatments. By combining IFOPA’s global reach with the Trust’s on-ground network, families receive timely, tailored guidance—proving that knowledge is a form of care in itself. To learn more, visit: https://foptrust.org/For international resources, visit: https://www.ifopa.org/

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1520 Clay St, Ste H2, North Kansas City, MO 64116North

1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for... Their mission is to eli...

From Emergency Medical Cards To Step-by-step Flare-up Protocols, IFOPA Resources

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 Nepal benefitted from these tools, using them to share accurate guidance with local doctors. Beyond resources, IFOPA connects families through international webinars, family networks, and online communities...

Connect With The World’s Biggest Companies, Everyday Share Your Expertise

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Michelle Davis, Executive Director Of The International Fibrodysplasia Ossificans Progressiva

Michelle Davis, Executive Director of the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), gives an overview of this rare disease as well as IFOPA’s advocacy work. FOP is a rare disorder in which skeletal muscle and connective tissue are gradually replaced by bone. This condition leads to bone formation outside of the skeleton that restricts movement. This generally becomes...

These Flare Ups Last For Several Days To Months And

These flare ups last for several days to months and often result in permanent bone growth in the injured area. FOP is almost always caused by a genetic change at the same place in the ACVR1 gene. Current management of the disease relies mainly on symptom management. However, Sohonos (palovarotene) was recently approved to slow bone growth in adults and children aged 8 years and older for females, ...