International Clinical Council on Fibrodysplasia Ossificans Progressiva
About Us
The ICC is an autonomous and independent group of 21 internationally recognized clinical experts (MDs & Dentists) in FOP from 14 nations and 5 continents.
In June 2017, the International Clinical Council (ICC) on FOP was established to consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP.
Our Mission
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To Educate
on best practices for the care of individuals with FOP.
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To Advise
on the design and conduct of interventional trials in FOP patients
(Dec. 2, 2020 – Editorial from the ICC regarding clinical trials) -
To Publish
from time-to-time the
FOP Clinical Guidelines. -
To Advocate
for a robust infrastructure for data sharing and collaboration on vital and emerging matters of clinical concern to the FOP community.
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To Identify
less explored areas of FOP patient care and issues that may drive insight into research.
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To Share
valuable clinical experiences from the care of patients with classic and variant FOP.
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To Better Understand
the variable phenotype of FOP and the systemic nature of FOP pathology.
The ICC & FOP
Presentation
by Frederick S. Kaplan, M.D.
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.”
ICC Members
First row: Fred Kaplan, Robert Pignolo, Ed Hsiao, Mona Al Mukaddam, Patricia Delai, Richard Keen, Chris Scott
Second row: Elisabeth Marelise Eekhoff, Zvi Grunwald, Genevieve Baujat, Robert J. Diecidue, Vrisha Madhuri, Clive Friedman, Carmen De Cunto,
Third row: Alberto Hidalgo-Bravo, Jung Min Ko, Raphaella Stander, Clemens Stockklausner, Staffan Berglund
Associate Members
Xiaobing Yu, Javier Bachiller Corral, Angela Cheung, Lisa Friedlander, Johannes Roth
Advisory Members
Tae-Joon Cho, Michael Zasloff, Keqin Zhang, Rolf Morhart, J. Coen Netelenbos
Learn More
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Brief Outlines
SEPT 2025
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Updated FOP Treatment Guidelines
JULY 2024
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ICC Statement on Off Label Medications
MAY 2024
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Updated COVID Recommendations
JUNE 2023
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ICC Statement on Palovarotene
AUGUST 2023
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Declaración del Consejo Clínico Internacional en FOP sobre el Palovaroteno
JUNE 2023