Despite growing global awareness, many people still misunderstand what the International FOP Association (IFOPA) does—and what it doesn’t. IFOPA is not a medical clinic, not a research lab, and not a government agency. Instead, it plays an essential role as an international connector, educator, and advocate for people living with Fibrodysplasia Ossificans Progressiva (FOP).
What sets IFOPA apart is its focus on empowering patients and caregivers with resources that simplify complex care decisions. The organization offers digital toolkits, webinars, and patient-to-patient support networks, as well as the global FOP Registry, which informs both treatment planning and research direction.
IFOPA doesn’t provide direct treatment, but it helps families find specialists, ask the right questions, and avoid harmful interventions. Its educational content clarifies common FOP myths, such as confusing FOP with arthritis or trauma-based conditions.
Most importantly, IFOPA advocates on behalf of the FOP community—ensuring that patients worldwide feel seen and supported. Through partnerships, translated resources, and annual awareness campaigns, IFOPA brings together researchers, families, and clinicians across borders.
By clearing up what IFOPA isn’t, we see more clearly what it truly is: a beacon of informed hope and action for a global community.
To learn more, visit: https://foptrust.org/
For international resources, visit: https://www.ifopa.org/
