Happy Global FOP Awareness Day!

Today, we stand united in support of everyone living with fibrodysplasia ossificans progressiva (FOP). No one facing FOP should ever feel alone—or go without access to the care they need and deserve.

Thanks to a generous match, your gift today will go twice as far—helping bring expert, compassionate care within reach for more individuals living with FOP.

FOP Awareness Day marks a historic milestone. On this day in 2006, researchers at the University of Pennsylvania announced the discovery of the ACVR1 gene, the genetic cause of FOP. This groundbreaking moment launched a new era in FOP research and brought us one step closer to effective treatments—and one day, a cure.

On this important day of visibility, we’re not only raising awareness—we’re working together to expand access to emerging treatments and build a global network of knowledgeable, compassionate providers.

Listen in as voices from the FOP community around the world join together today to share a message of strength, connection, and hope. Their messages remind us why awareness matters—and what we can achieve when we work together.

By supporting the IFOPA, you’re turning awareness into action—fueling advocacy, supporting families, and helping ensure that care is available wherever it’s needed most.

We are at a pivotal moment in FOP care. As new treatments move closer to reality, we must ensure healthcare providers are ready to deliver the expert care individuals with FOP deserve.

This work cannot be done without you. Will you make a special Awareness Day gift in honor of someone with FOP?



From now through April 30, your gift will be DOUBLED thanks to a matching gift of up to $50,000 from generous supporters! That means twice the impact in expanding FOP care.

We are stronger together. Today, we stand with every person living with FOP. Thank you for being part of this journey.

With appreciation for your support,

FOP Mom and IFOPA Board Chair

P.S. Don’t forget! Every gift made today is matched, and we are at 51% of our $50,000 goal. Now is the time to double your impact! Donate now