There is currently no cure for Fibrodysplasia Ossificans Progressiva, but there are several potential therapies currently undergoing clinical trials, and the first ever treatment (palovarotene) to slow progression of FOP for some patients was made available in Australia via the Pharmaceutical Benefits Scheme (PBS) on 1st September 2025. Resources/contacts for health professionals regarding palovarotene are available here. Research into understanding how best to care for people with FOP, and how to stop FOP, is ongoing.
Some steroid medications (prednisolone) may assist in reducing swelling and the risk of bone formation if administered as soon as possible. This is not routinely recommended for all swellings, only those affecting the major joints (shoulders, hips, knees, elbows, wrists, jaw).
A person with FOP can not have surgery to remove bone. Surgery involves a form of trauma to the tissues involved. This often causes explosive new bone formation, possible in excess of the amount removed by the surgery.
For more information on the treatment of FOP, see the current guidelines from the International Clinical Council on FOP at the link at the top of every page on this website.
The 2025 FOP Australia Conference included presentations on multiple aspects of treatment, including an overview by Professor Edward Hsiao “What does a doctor need to know about FOP?”. This summary presentation, and recordings of sessions detailing specific issues such as lung health, skin health and dental care in FOP are available via the conference page.
You can also access an overview in the International FOP Association video on Treatment, and other topics, on our videos page.
Key points for emergency treatment:
- FOP is accelerated by trauma so patients must be handled gently and falls must be prevented. Evaluate the emergency, and if life-threatening, protect the patient as if FOP were not an issue. FOP itself rarely causes an emergency.
- AVOID DEEP TISSUE TRAUMA – including intramuscular injections (IM) if possible
- STABILISE AND TREAT – No IM injections but venipuncture, subcutaneous and intravenous meds are okay
- TAKE INTUBATION PRECAUTIONS – protect jaw and get expert anaesthesia assistance as the jaw and neck may be completely or partially locked
- CONSULTING OF EXPERT DOCTORS – strongly recommended regarding the potential risks of any surgical or medical inventions being considered
- No patient should be self medicated without the advice and guidance of a doctor.
- If time permits, consulting of expert doctors is strongly recommended regarding potential risk of any surgical or medical interventions being considered.
Emergency Medical Contacts (International)
These very experienced FOP doctors can be contacted to assist your local treating team if required:
Frederick Kaplan, MD
University of Pennsylvania
Tel: + (215) 294-9145 (clinical office)
Tel: + (215) 545-0758 (home)
frederick.Kaplan@uphs.upenn.edu
Robert Pignolo, MD, PhD
Mayo Clinic
Tel: + (507) 293-0813
Tel: + (507) 293-7940
pignolo.robert@mayo.edu
Edward Hsiao, MD, PhD
University of California, San Francisco
Tel: +(415) 476-9732
edward.hsiao@ucsf.edu
There is also a list of local clinicians who have helped care for people with FOP available here, for people seeking ongoing care.