FOP National Organizations

Although FOP is a rare disease, affecting only approximately 2500 world wide, the work of the International FOP Association is supported and complemented by national organizations across the globe. Organizations are listed below, along with website, social media pages and email contact, if available. While these organizations are not formally affiliated with IFOPA, we are deeply grateful for the work they do outside of the USA to serve the FOP community and connect individuals and families with resources and other FOP patients on a regional and national level.