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.
CURRENT NEWS
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Journey to Discovery
MARCH 2026
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Editorial – Clinical Trials
JANUARY 2026
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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
The ICC & FOP
Presentation
by Frederick S. Kaplan, M.D.
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