Sharing Fibrodysplasia Ossificans Progressiva Stories During Global FOP Awareness Day

Global FOP Awareness Day is on April 23, and Global Genes asked Cathryn Roys, Fundraising and Special Projects Manager for The International FOP Association (IFOPA) to talk about the condition, and the campaign to raise awareness for the condition. 

FOP is a genetic musculoskeletal disease that causes bone to replace the body’s soft tissues. Over time, muscles, tendons, ligaments and cartilage are replaced by bone, causing catastrophic mobility loss and permanent disability.

FOP will progress for no known reason at all, but soft tissue injury, and even viruses, can ramp up progression and cause painful flares. These soft tissue swellings, or flares, often precede bone growth. A soft tissue injury can be something as small as a bump or a childhood vaccine, or a more severe injury like a diagnostic biopsy or surgery. Those with FOP are misdiagnosed 50% of the time and see an average of three specialists before they receive a correct diagnosis. This allows a lot of opportunity for unnecessary, and harmful, treatments to occur, causing further progression.

FOP affects one in a million people. With a disease so rare, healthcare professionals are not going to learn about it in their training. The International FOP Association (IFOPA) is a patient advocacy organization serving those with the ultra-rare disease fibrodysplasia ossificans progressiva (FOP), their families and caregivers. As such, we have focused on raising awareness throughout the general population and healthcare community since the IFOPA was founded in 1988. On April 23, it was announced that the single gene responsible for FOP was discovered. That day is now celebrated globally as FOP Awareness Day.

In 2021, IFOPA started a unified, worldwide initiative raising awareness about FOP around the globe. This campaign allows us to create highly compelling images with captions that share what FOP is…and what it isn’t….for anyone who cares about FOP to use, no matter where they live. We translate each image so that FOP national organizations around the world can participate in this important, collaborative awareness campaign. 

A highlight of the campaign each year is the collection of Share My Story videos we develop. No one can share what it’s like to live with FOP better than someone living with it or their loved ones who often serve as their primary, and sometimes sole, caregivers. Over the four years of the Global FOP Awareness campaign, we’ve created over 20 videos of individuals from 14 countries sharing their very personal and unique stories. I always wonder how many people hear about FOP for the first time through these impactful stories. 

This special campaign grows every year, and in 2024 we have 25 countries participating, representing 19 languages. I love opening social media each day to see the same information about FOP being shared from so many places, to so many people, speaking so many different languages.

The FOP national organizations around the world are often led by a person with FOP or a parent. I’m grateful to those who sign on to participate each year and take the time to post so many images and videos throughout April. Their combined efforts and collaboration are helping us push forward the story of FOP, ensuring we raise awareness to end harmful misdiagnosis so more individuals get diagnosed early, receive the care they need and can join our global community of FOP families around the world. 

Watch more stories that IFOPA developed this year: