Publication in a peer-reviewed journal makes it easier to find and use the Guidelines

The IFOPA is pleased to share that the International Clinical Council (ICC) on FOP has published the Medical Guidelines for FOP in JBMRPlus.

As noted in the letter below from the Corresponding Editors, Drs. Fred Kaplan and Bob Pignolo, "These guidelines are a summary of the main document (The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations) available on the ICC website. This peer-reviewed, published summary streamlines and supplements the main document but does not replace it. Please continue to use the main guidelines, as needed."

The ICC is an autonomous and independent group of internationally recognized physicians who are clinical experts in FOP. The ICC shares best practices for clinical care and research and is available for consultation. The ICC was established in 2017. 

The IFOPA thanks the ICC members for summarizing the Treatment Guidelines and pursuing publication in a peer-reviewed journal. This publication is critical because it enables healthcare providers, regulatory agencies, and payers to find the Treatment Guidelines more quickly in their web search results.

We encourage you to print this 13-page publication and share it with your local healthcare providers. Key topics addressed include:

1. General recommendations

2. Physical activities

3. Anesthesia

4. Chronic pain

5. COVID-19

6. Dental emergencies

7. Falls

8. Flare-ups (back/chest)

9. Flare-ups: (limbs/throat/submandibular)

10. Flare-ups (prophylaxis)

11. Fractures

12. Gastrointestinal issues

13. Hearing

14. Immunizations

15. Influenza

16. Injuries

17. IVs

18. Kidney stones

19. Limb swelling

20. Medications

21. Mental health

22. Neurological issues

23. Nutrition

24. Occupational therapy

25. Orthodontics

26. Physical therapy

27. Pregnancy

28. Pressure ulcers

29. Respiratory Health

30. Scalp flare-ups

31. School

32. Skin

33. Spinal deformity

34. Surgery

35. Teeth

36. Current Treatment Considerations

Letter from the International Clinical Council on FOP

October 20, 2025 

Dear Members of the FOP Community, 

On behalf of the International Clinical Council on FOP (ICC) and consultants, we are proud to announce the official publication of The Medical Guidelines for FOP. The ICC has worked assiduously on this summary document, which represents a monumental effort on the part of many. 

These guidelines are a summary of the main document (The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations) available on the ICC website. This peer-reviewed, published summary streamlines and supplements the main document but does not replace it. Please continue to use the main guidelines, as needed. 

One of the reviewers wrote: “This manuscript is a model for a succinct yet thorough guideline on the management of a rare condition. It provides a reference to an in-depth, extensive online resource for those who want to take a deeper dive. This approach should be recommended for guideline summaries that are available in the literature for all conditions, both rare and common.” 

We sincerely hope that this official, published version of The Medical Guidelines for FOP will be freely downloaded and widely used as it is relevant to FOP patients, families, physicians, dentists, medical personnel, and caregivers worldwide. We hope that YOU find it useful. 

Sincerely, 

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

Robert J. Pignolo, MD, PhD; The Mayo Clinic, Rochester, MN 

Corresponding Editors