IFOPA Launches Fourth Global Celebration of FOP Awareness Day

https://assets.nationbuilder.com/ifopa/pages/3124/attachments/original/1712631894/IFOPA_Flags2024_update_small_3_%281%29.jpg?1712631894Around the world, individuals with FOP are misdiagnosed. 

Since FOP is an ultra-rare disease, many doctors are not familiar with its early symptoms nor have they encountered a patient with FOP, leading to improper care that can progress symptoms. 

That’s why we celebrate Awareness Day on April 23. 

We know that knowledge is power. When the general public and the medical community know the symptoms of FOP, individuals are more likely to receive an accurate diagnosis and get the care they deserve. 

Since 2021, we have proudly partnered with FOP organizations around the world to celebrate the day it was announced the FOP gene, ACVR1, had been discovered. This year, 25 countries are participating in Awareness Day with materials translated into 19 languages. 



"Together we can shed light on the challenges living with FOP brings, but also showcase how we are more than our diagnosis,” said Helen Bedford-Gay, FOP mom and co-founder of the UK organization FOP Friends. “By working together, we can break down barriers, advocate for research and create opportunities for everyone living with FOP to thrive."

When you support the IFOPA, you’re supporting a global community of individuals impacted by FOP. Choose how you’ll join us on Awareness Day to help people around the world receive an early and accurate diagnosis: ifopa.org/awareness_day

"We recognize the urgent need to increase understanding and support for individuals affected by this rare genetic condition," said Sunil Ladwa, FOP dad and leader of FOP India. "By participating in this campaign, we aim to raise awareness, advocate for change, foster collaboration and empower individuals."

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

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