Care Considerations and Treatment Guidelines

Patients and Families

Care Considerations and Treatment Guidelines

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

Read the latest resources for individuals with FOP on COVID-19.

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 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.

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