International Clinical Council on FOP Releases Updated Treatment Guideline

April 12, 2021

Dear Members of the FOP Community,

On behalf of the International Clinical Council on FOP (ICC), its 20 members and five consultants, we are pleased to introduce the 2021 edition of


(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 an ultra-rare condition for which evidence-based information is limited.

Although there are common physical features shared by every person who has FOP, there are physiological differences among individuals that may alter the potential benefits or risks of any medication or class of medications discussed here. The decision to use or withhold a particular medication must ultimately rest with an individual patient and his or her physician.

With ongoing clinical trials and additional ones on the horizon, we anticipate that this document will be updated frequently.

We sincerely hope that this 2nd edition of The FOP Treatment Guidelines will be useful and relevant to FOP patients, families, physicians, dentists, medical personnel and caregivers worldwide.


Frederick S. Kaplan, M.D.; The University of Pennsylvania, Philadelphia, PA

Robert J. Pignolo, M.D., Ph.D.; The Mayo Clinic, Rochester, MN

Corresponding Editors

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter