Our Story:

In June 2017, the International Clinical Council (ICC) on Fibrodysplasia Ossificans Progressiva FOP was established to help consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The ICC is an autonomous and independent group of 21 internationally-recognized clinician experts in FOP from 14 nations (Argentina, Australia, Brazil, Canada, China, France, Germany, Italy, Japan, Netherlands, South Africa, South Korea, United Kingdom, and United States) and six continents (Africa, Asia, Australia, Europe, North America and South America).

Our Mission:

  1. To educate on best practices for the care of individuals with FOP.
  2. To advise on the design and conduct of interventional trials in FOP patients.
  3. To publish from time-to-time the FOP Clinical Guidelines.
  4. To advocate for a robust infrastructure for data sharing and collaboration on vital and emerging matters of clinical concern to the FOP community.
  5. To identify less explored areas of FOP patient care and issues that may drive insight into research.
  6. To share valuable clinical experiences from the care of patients with classic and variant FOP.
  7. To better understand the variable phenotype of FOP and the systemic nature of FOP pathology.