Learn more about this ultra-rare genetic condition and how you can help
Fibrodysplasia ossificans progressiva (FOP) is one of the rarest, most disabling genetic conditions.
FOP turns muscles, tendons, and ligaments throughout the entire body into bone. Bridges of extra bone often develop across joints, progressively restricting movement.
While FOP restricts a person’s ability to move, it does not impact their intellectual ability. People with FOP graduate from high school and many are employed in fulfilling jobs, while others attend college and have rewarding careers.
Many people with FOP choose to live with family members as they require a great deal of assistance performing daily life tasks; others live independently with the assistance of paid caregivers. The International FOP Association (IFOPA), the only organization in the United States and the largest organization in the world supporting research and serving FOP families, recently launched an important program – Ability Toolbox: Everyday Tools for Independent Living that empowers individuals with FOP by promoting independence through the use of tools and home adaptations.
Diagnosis and Early Intervention
Most people with FOP are born with two bent big toes – a tell-tale sign of this genetic condition that is often missed by doctors, nurses and others in the medical community. Families are often told their babies have congenital bunions; a diagnosis that could have serious consequences if corrective inventions or surgery is pursued.
Swellings, which look like tumors, may appear as early as infancy. These swellings eventually clear up but are often replaced by bone.
FOP can be diagnosed with a genetic test. Early and accurate diagnosis is key to avoiding procedures such as intramuscular injections, biopsies, and surgeries that cause the condition to progress more rapidly.
No Known Treatments
While there are six treatments currently in clinical trials, there are no approved drug treatments for FOP. The IFOPA is the largest investor in FOP research in the world – funding basic research, research to develop safe and transformative drug treatments, the only registry of FOP patients in the world and research tools like a FOP Biobank. FOP research helps others too – those who experience bone growth after hip replacement, blast injuries or amputations, as well as children with DIPG tumors.
Number of People Living With FOP
It is believed that FOP impacts 1 in 1.4 million people, but only about 900 people in the world have been diagnosed with this devastating condition. Watch this video to learn more about what life is like for kids and teens living with FOP.
About the IFOPA
The International FOP Association (IFOPA) was founded in 1988 by Jeannie Peeper, a young woman with FOP who had never met anyone else with the condition. Jeannie knew others with FOP must be feeling the isolation she experienced, which led her and 10 other founding members to start a pen pal organization. In 1990, an FOP family held the IFOPA’s first fundraiser which then funded the IFOPA’s first research initiative — a fellowship at the University of Pennsylvania. Two traditions began that year – FOP families and friends raising funds to #cureFOP and the IFOPA devoting the majority of its budget to FOP research. Today, the IFOPA is a worldwide organization serving people with FOP, their families, researchers, and clinicians worldwide.
The IFOPA Exists to:
- Fund research to discover treatments and, one day, a cure for FOP that will be accessible worldwide
- Raise awareness of FOP to end misdiagnosis and ensure people with FOP receive proper medical care without delay
- Advocate for individuals with FOP who face the challenges of a life-long, progressive condition
Educate and connect those newly diagnosed, along with their families and other caregivers
- Provide the FOP community access to the best possible FOP and disability resources & services
- Connect and support the FOP community around the world to end isolation for people living with FOP
How You Can Help Those Living with FOP
- Raise awareness of FOP to increase understanding, help end misdiagnosis and raise much-needed funds to support more FOP research and family services. Order awareness materials.
- Post about FOP on social media using the hashtag #cureFOP and link to this page
Make a gift to help champion the FOP cause
- Start a Facebook fundraiser
- Give in support of FOP research and post about FOP on #GivingTuesday (check back for details on our #GivingTuesday campaign)
- Get more fundraising ideas
- Sign up for our monthly eNewsletter to stay connected and informed