Fibrodysplasia ossificans progressiva: The patient voice

The following essays are the personal statements of two remarkable young individuals, Ian Cali and Laura Rossano, who candidly share their perspectives on living life with fibrodysplasia ossificans progressiva (FOP). These essays are excerpts from the opening comments that Ian and Laura delivered at The First and The Second International FOP Association Drug Development Forums in 2014 and 2016, respectively. We present these unedited essays in this special issue of BONE so that physicians, scientists, and researchers everywhere can glimpse the valiant challenges that envelop the lives of all individuals with FOP and can appreciate that diseases are not just biological processes but indelible human experiences. These last words belong to Ian and Laura. Frederick S. Kaplan M.D.; Eileen M. Shore Ph.D.; and Robert J. Pignolo M.D., Ph.D. - Guest Editors.