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About Ifopa Ifopa International Fibrodysplasia Ossificans

Leo Migdal
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about ifopa 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... 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.

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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...

FOP Is A Rare Disorder In Which Skeletal Muscle And

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 ma...

FOP Is Almost Always Caused By A Genetic Change At

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...

Accelerate Discovery With The World’s Leading Science, Technology And Innovation

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.