Spread The Word

We work closely with physicians, researchers and affected families, learning from them and sharing our knowledge in the interest of the larger disease community.

The impact of fibrodysplasia ossificans progressiva (FOP) is profound as the condition is severe, chronic and progressive. Because FOP is an ultra-rare disorder, few physicians are familiar with diagnosing and treating it, leading to missed, delayed or inaccurate diagnosis. We value transparency and collaborate with the disease community to advance the understanding of FOP and other rare diseases.