Fop Registry Ifopa International Fop Association
New Format! This year’s FOP Registry Annual Report is interactive to bring you even more dynamic data about FOP. The FOP Registry is the largest and most detailed database of medical information about FOP and those who are living with the condition. The best part about the FOP Registry is that it is growing every day. That’s because people from around the world living with FOP, and their doctors, are contributing to it. And that means that the understanding of this very rare condition is growing all the time.
The FOP Registry was started in 2015 and is open to anyone living with FOP. © 2024 FOP Registry. All Rights Reserved. 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.
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New Format! This Year’s FOP Registry Annual Report Is Interactive
New Format! This year’s FOP Registry Annual Report is interactive to bring you even more dynamic data about FOP. The FOP Registry is the largest and most detailed database of medical information about FOP and those who are living with the condition. The best part about the FOP Registry is that it is growing every day. That’s because people from around the world living with FOP, and their doctors, ...
The FOP Registry Was Started In 2015 And Is Open
The FOP Registry was started in 2015 and is open to anyone living with FOP. © 2024 FOP Registry. All Rights Reserved. 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, ...
It Causes Muscles, Ligaments, And Other Soft Tissues To Gradually
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 Re...
This Platform Gathers Real-world Data From Patients Globally, Helping Researchers
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 heal...
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