For Medical Professionals

Emergency medical information and treatment guidelines for medical professionals

Fibrodysplasia ossificans progressiva (FOP) is a rare genetic disorder in which bone forms in muscles, tendons, and other connective tissue. Joints become locked and permanently immobile. Learn more.

FOP is accelerated by trauma (including intramuscular injections) so handle the patient gently at all times and prevent falls. Evaluate the emergency and protect the life of the patient as if FOP were not an issue. FOP itself rarely causes an emergency.

PLEASE follow these emergency guidelines at all times. If time permits, consult a specialist regarding potential risks of any surgical or medical interventions being considered.

1. Avoid deep tissue trauma: including intramuscular (IM) injections, if possible
2. Stabilize & treat: NO IM injections but venipuncture, subcutaneous and intravenous meds are okay
3. Take intubation precautions: protect the jaw and get expert anesthesia assistance since the jaw and neck may be completely or partially locked
4. Consulting of expert doctors is strongly recommended regarding potential risks of any surgical or medical interventions being considered.

Emergency Medical Contacts

Mona Al Mukaddam, MD, MS
The Perelman School of Medicine - The University of Pennsylvania
(215) 294-9702
Mona.AlMukaddam@uphs.upenn.edu

Frederick Kaplan, MD
The Perelman School of Medicine - The University of Pennsylvania
(215) 294-9145 
Frederick.Kaplan@uphs.upenn.edu

Zvi Grunwald, MD (Anesthesiology)
Thomas Jefferson University
(215) 206-7362 (cell)
zvi.grunwald@jefferson.edu

Edward Hsiao, MD, PhD
University of California, San Francisco
(415) 353-2350 or (415) 476-9732
edward.hsiao@ucsf.edu

Robert Pignolo, MD, PhD
Mayo Clinic
(507) 293-0813 or (507) 293-7940
pignolo.robert@mayo.edu

Emergency Dentistry Contacts

Corrie J. Crowe, DDS
(856) 258-4025
drcrowedentistry@gmail.com

Robert J. Diecidue, DMD, MD (Oral & Maxillofacial Surgery/Dentistry)
Thomas Jefferson Hospital
(215) 955-6215
robert.diecidue@jeffersonhospital.org

Clive Friedman, DDS, FAAPD
Pediatric Oral Health & Dentistry
(519) 679-9860 (office)
(519) 657-6014 (cell)
clive@dentistryforkids.ca

A complete list of FOP Treatment Guidelines authors and consultants begins on page 105.

Treatment Guidelines

Download The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations

The proper care and management of FOP requires the ongoing involvement and consultation of a physician. No patient should be self-medicated without the advice and guidance of a physician. Please share this document with your/your child's physician.

The Treatment Guidelines document contains detailed medical information and guidelines on the symptomatic management of FOP. In order to continually provide updated guidelines with rapid access to physicians treating FOP patients worldwide, multiple simultaneous translations are not presently feasible. To ensure the widest distribution, guidelines are written in English and are accessible to physicians worldwide.

We emphasize that this report reflects the authors' experience and opinions on the various classes of symptom-modifying medications and is meant only as a guide to this controversial area of therapeutics. Although there are common physical features shared by every person who has FOP, differences among individuals 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.

Contact information for the authors of the FOP Treatment Guidelines begins on page 105.

International Clinical Council on FOP

The International Clinical Council on FOP (ICC) is an autonomous and independent group of 21 internationally-recognized physicians who are clinical 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). The ICC was established to coordinate and consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. The Council was officially established and its Constitution unanimously ratified on June 21, 2017. Access the ICC's website to learn more.

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