Patients and Families
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 about FOP.
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.
Download the Emergency Guidelines for 1st Responders, Physicians and Dentists
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.
A complete list of FOP Treatment Guidelines authors and consultants begins on page 122.
COVID-19 Resources
Due to the growth of extra bone, individuals living with FOP often have restricted lung capacity. In addition to being respiratory-compromised, intra-muscular immunizations are generally contraindicated in people with FOP because they can trigger a flare-up. To support people living with FOP and their doctors, the International Clinical Council on FOP has issued COVID-19 Guidelines for FOP.
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.
Emergency Medical Contacts
Mona Al Mukaddam, MD, MS
The Perelman School of Medicine - The University of Pennsylvania
(215) 662-9905
[email protected]
Frederick Kaplan, MD
The Perelman School of Medicine - The University of Pennsylvania
(215) 294-9145
[email protected]
Zvi Grunwald, MD (Anesthesiology)
Thomas Jefferson University
(215) 206-7362 (cell)
[email protected]
Edward Hsiao, MD, PhD
University of California, San Francisco
(415) 353-2350 or (415) 476-9732
[email protected]
Robert Pignolo, MD, PhD
Mayo Clinic
(507) 293-0813 or (507) 293-7940
[email protected]
Emergency Dentistry Contacts
Corrie J. Crowe, DDS
(856) 258-4025
[email protected]
Robert J. Diecidue, DMD, MD (Oral & Maxillofacial Surgery/Dentistry)
Thomas Jefferson Hospital
(215) 955-6215
[email protected]
Clive Friedman, DDS, FAAPD
Pediatric Oral Health & Dentistry
(519) 657-6014 (cell)
[email protected]
A complete list of FOP Treatment Guidelines authors and consultants begins on page 122.
International Clinical Council on FOP
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. Learn more at iccfop.org
Learn More About FOP Diagnosis, Treatment and Clinical Studies & Trials
FOP is one of the more than 6,000 rare diseases in the world. Health care providers simply cannot be familiar with every rare disease. We are pleased to connect you to FOP awareness and education programs that you can participate in online. Some of these programs offer continuing medical education (CME) credit. Learn more about the programs currently available.
FOP Patient Registry
The FOP Registry is a rare disease registry that is operated by the IFOPA, and dedicated to accelerating FOP research, enabling clinical trials in FOP and improving the understanding of FOP natural history. Learn how to include your patient's data and/or request data for your scientific research.
