Help Individuals with FOP Receive Early & Accurate Diagnosis
Journey to Discovery: A Breakthrough Built on Hope
Introducing a new video series produced by the IFOPA that revisits the extraordinary story behind the FOP gene discovery and celebrates the 20th anniversary of this turning point in our shared journey.
Launching March 31 on the IFOPA's YouTube channel.
WATCH THE SERIES
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.
What is fibrodysplasia ossificans progressiva (FOP)?
One of the rarest, most disabling genetic conditions known to medicine, fibrodysplasia ossificans progressiva (FOP) causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another.
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 Global 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 the Journey to Discovery video series, distributing FOP Awareness Kits at your school, 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, tote bag, hat and more. Inclusive sizing available.
NEW this year: all items available in English, Spanish and French! Shipping to the USA, Canada and Mexico.
Order FOP Awareness Kits
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're building a future where everyone with FOP can thrive. Your donation supports the IFOPA's work, including:
- Research funding and collaboration that capitalizes on existing momentum in the global development of a variety of treatment options for FOP
- Giving families practical strategies for navigating healthcare, education, careers, and daily life with FOP through podcasts, webinars, and community panels
- Grants and resources that help people with FOP live independently
- Support groups and mental health resources for people with FOP, caregivers, and bereaved families—because thriving with FOP means caring for emotional well-being, too
- Raising awareness with healthcare providers so people with FOP can receive a quick and accurate diagnosis and then access quality, informed care
Learn More about FOP
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
