International Clinical Council on
Fibrodysplasia Ossificans Progressiva

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 – (Dec. 2, 2020 – Editorial from the ICC regarding clinical trials)
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.

The ICC meeting in Baltimore, Maryland November 2018. From left to right;
Upper row: Robert Diecidue, Clive Friedman, Coen Netelenbos, Rolf Morhart, Christiaan Scott, Edward Hsiao, Elisabeth Marelise Eekhoff, Carmen De Cunto, Richard Keen, Maja DiRocco, Amanda Cali
Lower row: Patricia Delai, Robert Pignolo, Frederick Kaplan, Zvi Grunwald, Genevieve Baujat, Mona Al Mukaddam
Absent: Matthew Brown, Tae-Joon Cho, Nobuhiko Haga, Michael Zasloff, Keqin Zhang

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).

“During the past 25 years, the Fibrodysplasia Ossificans Progressiva (FOP) community has moved from the wastelands of a rare disease to the watershed of clinical trials. Together, we identified the genetic cause of FOP and used that knowledge to spearhead worldwide research efforts to develop therapies that will transform the care of individuals with FOP. We have expanded the frontiers of discovery and drug development, dismantled the physical and perceptual barriers that have impeded progress, and inspired global research in small molecules, antibodies, and gene therapy for FOP. We have formulated best practices and assembled teams of experts to optimize ambulatory and in-patient care of the FOP patient.”