Help Individuals with FOP Receive Early & Accurate Diagnosis
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.
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.
Get Involved
Getting involved in Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is a powerful way to support those affected by this ultra-rare disease.
You can help by spreading awareness on social media, sharing personal stories as an #FOPawareness Ambassador, distributing FOP Awareness Kits at your school, completing Awareness Day challenges or wearing your #FOPawareness t-shirt in your community.
Educating others about FOP can drive research, improve early diagnosis, and strengthen the community of patients, caregivers, and advocates. Every action—big or small—helps bring hope and visibility to those living with FOP. Join us in making a difference!
Visit our #FOPawareness Store
Proudly show your support for the FOP community with a fun graphic t-shirt or tote bag. Inclusive sizing available.
NEW this year: limited selection of Spanish language items available.
Become an #FOPawareness Ambassador
Take on a weekly challenge for FOP Awareness Day and make a difference! Whether you complete one challenge or all four, your efforts help shine a light on FOP. Share your challenge on social media, tag friends to join, and use #FOPawareness to spread the word!
Order FOP Awareness Kits (NEW!)
FOP Awareness Kits are a great way to share your child's FOP journey with educators, peers, coaches and the community. Kits include: Awareness Cards, #cureFOP bracelets, coaster, custom stickers, video resource for children and more!
Donate to the IFOPA
Together, we can remove barriers to access in healthcare for individuals living with FOP. Your donation supports our work to advance research, educate providers, and ensure no one with FOP is left without treatment options.
In This Together: Honoring Those We Hold in Our Hearts
Each year, our community lights candles to remember those who have passed away from FOP, and to honor the diverse people and perspectives that make up our community. This new event—an annual candle lighting— occurs on April 30 as we close out our celebration of FOP Awareness Day. Don’t forget to share your candle lighting photos on social media by tagging @IFOPA and using #cureFOP
Order your #cureFOP candle
Emma, living with FOP
Awareness Day
Learn More about FOP
Thank You to Our Generous Sponsors
Platinum Sponsor
Silver Sponsor
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 ifopa.org/fop_international_organizations
