Introduction Iccfop

Leo Migdal

-Dec 5, 2025, 2:01 PM

On behalf of the International Clinical Council on FOP (ICC) and its 21 members, 2 emeritus members, and six consultants, we are pleased to introduce the 2024 edition of THE MEDICAL MANAGEMENT OF FIBRODYSPLASIA OSSIFICANS PROGESSIVA: CURRENT TREATMENT CONSIDERATIONS (also known as The FOP Treatment Guidelines). The ICC has worked assiduously on this document which represents a monumental effort on the part of many. This report contains many new sections that we hope you will find useful, as well as completely updated sections that you found useful in the past. You will notice the Executive Summary of Key Practice Points (Section II). It is conservative, informative, and balanced – supported by the detailed exposition of the larger report.

We emphasize that this document reflects the authors’ experience and opinions on the various topics and classes of symptom-modifying medications and is meant only as a guide to this area of therapeutics for the... Registered Charity in England and Wales #1147704 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. on best practices for the care of individuals with FOP. on the design and conduct of interventional trials in FOP patients(Dec.

2, 2020 – Editorial from the ICC regarding clinical trials) from time-to-time the FOP Clinical Guidelines. Corresponding author: Frederick S. Kaplan, Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine, The Perelman School of Medicine at the University of Pennsylvania, Department of Orthopaedic Surgery, 3737 Market Street – Sixth Floor, Philadelphia, PA 19104, United... Received 2025 Aug 4; Revised 2025 Sep 5; Accepted 2025 Sep 9; Collection date 2025 Nov. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com. Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare genetic condition characterized by congenital malformations of the great toes and progressive heterotopic ossification (HO) in specific anatomic patterns. Present management summarized here is focused on early diagnosis, assiduous avoidance of injury and iatrogenic harm, symptomatic amelioration of painful flare-ups, and optimization of residual function. Twenty-one members of the International Clinical Council on FOP (ICC) and seven consultants from 15 countries, chosen for their clinical expertise in FOP, developed this summary statement. Further advances in therapeutics will be based on rigorous clinical trials to assess novel and emerging treatment and prevention strategies.

A detailed and updated exploration of the topics outlined in this brief perspective can be found in “The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations” which can be found on the International... Keywords: fibrodysplasia ossificans progressiva, heterotopic ossification, BMP signaling pathway, ACVR1, guidelines This illustration was co-created with people living with FOP. According to the International Clinical Council (ICC) Guidelines, a multidisciplinary approach is essential to providing optimal patient care and lessening the chance for potentially harmful interventions.1 Regardless of the health consideration at hand, FOP will impact the types and ways in which care is given. Providers of all types and levels of experience should consult with an FOP expert when treating a patient with FOP.

The International FOP Association (IFOPA) and ICC websites feature critical medical information and guidelines on the management of FOP. The ICC is an independent group of FOP clinical experts made up of 21 internationally recognized physicians from 14 countries. Cross-disciplinary team of students and faculty working with those battling fibrodysplasia ossificans progressiva. Fibrodysplasia ossificans progressiva (FOP), also known as Münchmeyer disease, is an extremely rare connective tissue disease which causes fibrous tissue—including muscles, tendons and ligaments—to turn to bone. FOP impacts an estimated 4,000 people worldwide. A local team guided by Dr.

Zvi Grunwald—Jefferson’s chair of anesthesiology—and Dr. Fred Kaplan, from Penn Medicine, works with the International Clinical Council on Fibrodysplasia Ossificans Progressiva (ICCFOP) to push the boundaries of understanding and treating this rare disease. Their efforts have turned Philadelphia into a hub of FOP knowledge, with Drs. Grunwald and Kaplan at the helm, traversing the globe to share their expertise into what’s been deemed “a catastrophic sabotage of the body’s muscular skeletal system.” “At Jefferson, we created a Center of Excellence for the perioperative care of patients with FOP, and the collaboration with Penn turned Philadelphia into a mega center converging best clinical practices, innovation and emerging... Grunwald, who serves as executive director of the Jefferson Israel Center and The James D.

Wentzler Professor and Emeritus Chair of Anesthesiology.

Introduction Iccfop

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On Behalf Of The International Clinical Council On FOP (ICC)

We Emphasize That This Document Reflects The Authors’ Experience And

2, 2020 – Editorial From The ICC Regarding Clinical Trials)

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A Detailed And Updated Exploration Of The Topics Outlined In