Fibrodysplasia Ossificans Progressiva (FOP) is one of the rarest and most disabling genetic conditions known to medical science. But amidst the uncertainty it brings, there stands a powerful global force dedicated to advocacy, research, and support—the International FOP Association (IFOPA). Since its inception, IFOPA has played a crucial role in uniting the global FOP community, accelerating scientific progress, and transforming lives through education and empowerment.
At its core, IFOPA is a global nonprofit organization driven by a singular mission: to fund research, support individuals living with FOP, and raise worldwide awareness. With members in more than 50 countries, the organization serves as the central hub for families, researchers, clinicians, and supporters seeking information, hope, and connection.
Driving Research That Matters
IFOPA is one of the largest funders of FOP-specific research globally. Through its Competitive Research Grant Program, it provides essential financial support to scientists studying the genetic, cellular, and molecular mechanisms of FOP. The association has played a key role in landmark breakthroughs, including the identification of the ACVR1 gene mutation responsible for FOP—an achievement that opened the door to potential therapies and clinical trials.
They continue to drive innovation by connecting researchers through conferences, data-sharing initiatives, and global collaborations. Their FOP Biobank & Registry is a powerful tool for collecting patient data to fuel future discoveries and improve care guidelines.
Supporting Families Every Step of the Way
For families affected by FOP, IFOPA provides more than just information—it offers a lifeline. Their Family Services Program provides personalized guidance to newly diagnosed families, educational webinars, mental health resources, and materials translated into multiple languages. Their Resilient Living Program supports emotional and psychological well-being, addressing the often-overlooked mental health side of rare disease management.
Importantly, IFOPA ensures that patients, caregivers, and medical professionals are well-informed. Their FOP Learning Center, printed guides, and translated resources empower people to understand the condition, manage flare-ups, and advocate for themselves and their loved ones.
Building Global Community and Awareness
Isolation is a painful reality for many living with rare diseases. IFOPA actively works to eliminate that through community-building efforts like FOP Connect, an online platform for patients and caregivers to share stories, ask questions, and support one another. Their annual Family Gathering—held both virtually and in-person—offers a space for connection, learning, and healing.
Their awareness campaigns, such as FOP Awareness Day (April 23), amplify the voices of people with FOP, educate the public, and engage new supporters. These efforts not only drive donations but also inspire new research and policy discussions.
The Road Ahead
The journey with FOP is filled with challenges, but IFOPA is determined to pave the road toward a better future. With multiple clinical trials underway and promising therapies on the horizon, the association continues to push boundaries. Their work brings the global FOP community together with one goal: to find a cure while improving lives along the way.
IFOPA’s impact is real, far-reaching, and deeply human. From research labs to living rooms across continents, they are proving that even the rarest conditions deserve the brightest spotlight—and the strongest global support.
