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Our Mission Ifopa International Fibrodysplasia Ossificans

Leo Migdal
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our mission 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... The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, one of the first individuals diagnosed with Fibrodysplasia Ossificans Progressiva (FOP). From a small patient-led initiative, IFOPA has evolved into a global organization that champions FOP awareness, supports groundbreaking research, and empowers patients and families around the world.

FOP is one of the rarest and most disabling genetic conditions. It causes muscles, ligaments, and other soft tissues to gradually turn into bone, leading to loss of mobility and severe complications. Because of its rarity—affecting approximately 1 in 2 million people—most doctors are unaware of its symptoms, leading to frequent misdiagnoses. IFOPA fills this crucial gap. It provides multilingual educational materials, maintains the largest international FOP Registry, supports families through peer connection programs, and funds research into potential treatments. Its resources help newly diagnosed patients navigate the complex path of FOP care.

One of IFOPA’s greatest achievements is the FOP Registry. This platform gathers real-world data from patients globally, helping researchers track patterns and improve clinical trial designs. IFOPA also helps connect patients to trials and maintains close partnerships with pharmaceutical companies working on FOP therapies. In addition, IFOPA organizes awareness events like FOP Awareness Day (April 23), distributes emergency medical guides, and trains healthcare professionals to recognize early signs of FOP. They are not only spreading awareness—they are shaping the future of rare disease care. What is Fibrodysplasia Ossificans Progressiva (FOP)?

FOP is one of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. For information on FOP please visit their web site at www.ifopa.org. The IFOPA is a 501c3 nonprofit organization that provides hope to individuals with FOP and their families through education and support programs while funding research to find a cure and raising awareness for the... The IFOPA was founded in 1988 by Jeannie Peeper who had never met anyone else with the disease.

This isolation was typical before the IFOPA was formed, and Jeannie's goal was to bring people with FOP together. Today, the IFOPA is the umbrella organization for people with FOP worldwide and the place for FOP families to come for advocacy, education and support. 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. First prospective study to assess the association of fibrodysplasia ossificans progressive (FOP) flare-ups and extra-skeletal bone growth (heterotopic ossification or HO) with functional impairment PARIS, France, 28 September 2022 – Ipsen (Euronext: IPN; ADR: IPSEY) today announced the publication of its Natural History Study (NHS) of FOP in Genetics in Medicine, the official journal of the American College... This is the first time a global, prospective, longitudinal evaluation of FOP has been carried out, with data collected over a period of 36 months. Findings demonstrated the debilitating impact and progressive nature of the disease, with the greatest progression of new heterotopic ossification (HO; or bone growth that takes place outside of the normal skeletal system in joints...

“Natural history studies are essential to understanding ultra-rare diseases with high unmet need like FOP, increasing our knowledge around the natural course of disease, diagnoses, monitoring techniques, potential biomarkers and new outcome measures,” said... Robert Pignolo, Professor of Geriatric Medicine, Mayo Clinic, USA. “This is the first study of its kind following the progression of FOP over three years. These results demonstrate the significant impact of the disease on people living with FOP. Furthermore, it will facilitate the evaluation of meaningful endpoints in the development of new therapies, which are critically needed for individuals with FOP.” Results from the NHS demonstrated at month 36, across the whole study population, a mean of 2.6 body regions with new HO; this was highest (3.9) in those aged between two and eight years...

However, although individuals aged 25 – 65 years had the lowest new HO volume at annual visits, approximately 70% continued to accumulate new HO across the duration of the study. These data confirmed the progressive nature of FOP with characteristic patterns of growth, starting in younger individuals initially across the upper and mid-torso, progressing into hip and lower-leg regions, and with accumulation of HO... The assessment of flare-ups showed, 82 (71.9%) individuals experienced a total of 229 flare-ups, most commonly in the upper back (17.9%), hip (14.8%) and shoulder (10.9%). Individuals between the ages of two and eight years, were most likely to report more than one flare-up throughout the study duration. For those who experienced flare-ups, the most common symptoms were pain and soft tissue swelling. Imaging at the site of the flare-up revealed HO occurring at the time of the flare-up, with many individuals going on to experience new HO in the following 12 weeks.1

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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 One Of The Rarest And Most Disabling Genetic

FOP is one of the rarest and most disabling genetic conditions. It causes muscles, ligaments, and other soft tissues to gradually turn into bone, leading to loss of mobility and severe complications. Because of its rarity—affecting approximately 1 in 2 million people—most doctors are unaware of its symptoms, leading to frequent misdiagnoses. IFOPA fills this crucial gap. It provides multilingual e...

One Of IFOPA’s Greatest Achievements Is The FOP Registry. This

One of IFOPA’s greatest achievements is the FOP Registry. This platform gathers real-world data from patients globally, helping researchers track patterns and improve clinical trial designs. IFOPA also helps connect patients to trials and maintains close partnerships with pharmaceutical companies working on FOP therapies. In addition, IFOPA organizes awareness events like FOP Awareness Day (April ...

FOP Is One Of The Rarest, Most Disabling Genetic Conditions

FOP is one of the rarest, most disabling genetic conditions known to medicine, FOP causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another...

This Isolation Was Typical Before The IFOPA Was Formed, And

This isolation was typical before the IFOPA was formed, and Jeannie's goal was to bring people with FOP together. Today, the IFOPA is the umbrella organization for people with FOP worldwide and the place for FOP families to come for advocacy, education and support. Accelerate Discovery with the World’s leading Science, Technology and Innovation Marketplace Connect with the world’s biggest companie...