Awareness Day

April 23, 2024 - Global FOP Awareness Day

Help Individuals with FOP Receive Early & Accurate Diagnosis

Together, we can decrease dangerous misdiagnosis and ensure individuals with fibrodysplasia ossificans progressiva (FOP) receive the care they deserve.
United in Hope. Global FOP Awareness Day - April 23 2024

The journey to an accurate FOP diagnosis can be exhausting and overwhelming.

On average, a family will visit three specialists before receiving an FOP diagnosis — and some will see up to 10. They have to travel from specialist to specialist, spending significant time and money in their desperate search for answers.

A misdiagnosis can be even costlier. Procedures like diagnostic biopsies and surgeries not only waste time and money but can also trigger flare-ups, speeding up the progression of FOP.

Since FOP is an ultra-rare disease, many doctors are not familiar with its early symptoms or have never encountered a patient with FOP, leading to dangerous misdiagnosis and improper care.

Percentage of individuals who initially receive a misdiagnosis
Average number of specialists seen before receiving a correct diagnosis
Average age of a correct diagnosis, while 3 is the average age of first symptoms
The average amount of time it takes from first symptoms to a correct diagnosis

When a misdiagnosis can lead to irreversible damage, the stakes are high.

That’s why the IFOPA is committed to partnering with the medical community to provide informed care, spread awareness, build an interconnected network of resources and advance the search for treatments and a cure.

Your Awareness Day gift allows us to continue our vital work to raise awareness, leading to better resources and care for everyone impacted by FOP. 


“Life with FOP may look different, but life is still a beautiful thing and you can accomplish a lot. There is hope.”
Laura Rossano
An individual living with FOP, based in New York who received two misdiagnoses and unnecessary surgical interventions before receiving an accurate FOP diagnosis at the age of 5
Give by April 30 to have your gift MATCHED.
up to $50,000

When you give to the IFOPA, your generosity helps:

Provide informed care.

We educate physicians on the symptoms and best care practices of FOP — so they can diagnose patients accurately, provide optimal care and connect them to studies and trials. Learn more at


Spread awareness.

As an ultra-rare disease, FOP is not widely known or understood in the medical community. When we equip families to spread awareness and directly provide FOP educational resources to physicians, school nurses and other health care providers, more individuals get diagnosed early and receive the care they need.

Connect with a vast medical network.

Managing the whole-body symptoms of FOP requires a team of health care providers uniting their respective expertise. When doctors, dentists, occupational therapists and researchers around the world learn from each other, they can better serve the FOP community.

Advance the search for treatments and a cure.

At the IFOPA, we’re proud to collaborate with researchers around the world in our search for treatments and a cure. We encourage the research community to access the FOP Registry, apply for grants, and use our research tools and resources to guide their work.

See firsthand the value of an accurate FOP diagnosis.

Will you join us?

With your help, we can reduce dangerous misdiagnosis and raise awareness of FOP.


Order your 2024 Awareness Day
t-shirt to support the IFOPA and raise awareness.

For the IFOPA Community


For Individuals with FOP



Fund vital awareness efforts and have your gift matched today to amplify your impact.



Find shareable FOP facts on our social media channels that you can repost when you share your own FOP story.

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Thank you for advocating for early and accurate diagnosis!

When you support the IFOPA, you support a global community of individuals impacted by FOP. Awareness Day is a special opportunity for FOP organizations around the world to come together to celebrate the day the FOP gene, ACVR1, discovery was announced in 2006.

We’re proud to work together to build a brighter future.


For a list of all countries served by FOP organizations, visit

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