Fibrodysplasia ossificans progressiva (FOP) is one of the more than 7,000 rare diseases in the world. We are pleased to connect you to FOP awareness and education programs you can participate in online. Some of these programs offer continuing medical education (CME) credit.
**These programs have been developed and sponsored by other organizations or companies with content provided by FOP experts. You will find the developer and sponsor of each program in the listing below.**
If you would like to know more about the current clinical trial opportunities for those living with FOP, visit ifopa.org/about-clinical-trials. To see a list of trials near you, check out the IFOPA's Trial Locations Map.
FreeCME
Bunion-like toes present at birth and tumor-like swellings in a young child are diagnostic signs of fibrodysplasia ossificans progressive (FOP), a disease with recent advances made in therapy. Upon completion of the course, learners should be able to associate great toe deformities with FOP and avoid misdiagnosing FOP as soft tissue sarcoma. Biopsy for “tumor” should be avoided in FOP. This activity is designed to meet the educational needs of healthcare providers in pediatrics, primary care, oncology, surgery, radiology, acute care, emergency medicine, rheumatology, and infectious disease and is jointly provided by P2P Syncro, International Fibrodysplasia Ossificans Progressiva Association (IFOPA), and Partners for Advancing Clinical Education. CME credit provided until 9/10/25.
Medlive
MedLive's Obtaining Support and Ongoing Care for Children and Adults with Fibrodysplasia Ossificans progressive (FOP) is a 7-part series on FOP where you’ll hear from specialists in FOP clinical care, social workers, people with FOP, caregivers, and advocates. Each program explores different aspects of FOP care, methods to avoid unnecessary trauma, and strategies for partnering with your multidisciplinary care team. This activity is supported by an independent medical education grant from @Regeneron Pharmaceuticals, Inc.
CheckRare
CheckRare is the only publisher and learning platform focused exclusively on rare diseases and rare cancers. They bring physicians and patients the best science, research, and clinical practice information and present it in understandable and clinically useful formats that inform health care delivery and improve patient outcomes. They have several short articles and YouTube videos on FOP for free on their webpage.
PeerView
In order to educate clinicians on the pathophysiology and full spectrum of clinical manifestations of FOP, PeerView, the American Society for Bone and Mineral Research (ASBMR), the International FOP Association (IFOPA), and PeerView's FOP Scientific and Patient Voice Consortium have prepared this FOP Education Collection comprising four unique micro-learning modules, video diaries, and a 3D animation. Participation in this activity will help familiarize learners with up-to-date clinical science and best practices for identifying FOP. By completing these educational activities, learners will be better able to recognize and understand FOP and its manifestations and avoid iatrogenic harm caused by diagnostic errors. This activity is supported by an educational grant from Regeneron Pharmaceuticals.
PRIME
For patients with fibrodysplasia ossificans progressiva (FOP), prompt diagnosis and effective management are crucial to preventing disease exacerbation and improving quality of life. In this convenient three-part micro-learning video library, expert faculty will review the pathophysiology of FOP, latest diagnostic strategies, clinical evidence related to emerging therapeutics that are poised to revolutionize the FOP treatment paradigm, and strategies for personalized, patient-centered FOP care. This activity is supported by an educational grant from Ipsen Biopharmaceuticals, Inc.
Springer Healthcare IME "FOP Recognition, Treatment, and Hope"
Springer Healthcare IME has developed an educational series with videos, publications, diagnosis and care tools, and a webinar that features an FOP family. This educational series is supported by an educational grant from Ipsen.
Tin Soldiers Global CME Series on FOP
The Tin Soldiers FOP Outreach Program offers the Global CME Series on FOP, a seven-part video series, for licensed health care professionals. Each session includes a talk by an FOP expert physician. The Series is accredited with the Health Professions Council of South Africa.
Access the FOP Treatment Guidelines
Download The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations
The FOP Treatment Guidelines, authored by the International Clinical Council on FOP, contain 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.
International Clinical Council on FOP (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 and is available for consult.
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.
Access a complete list FOP Treatment Guidelines authors and consultants. You can access more information on the International Clinical Council on FOP at iccfop.org.
Off-label Medication Resources
The International Clinical Council (ICC) on FOP recently issued a Statement Regarding Off-Label Medications for the Management of FOP.
At the 2023 FOP Family Gathering, during the session "Symptom Management Strategies for FOP," Dr. Mona Al Mukaddam, University of Pennsylvania, shared about off-label use of medications in FOP. View her talk which starts at 31 minutes
The ICC statement notes:
"ICC also recommends review of active clinical trials before making decisions regarding off label use of these medications. Taking any of these off-label medications may disqualify you from participation in formal clinical trials. In addition, clinical trials are monitored closely for safety and efficacy, and information from those clinical trials can help the FOP community advance different therapeutic options and support future drug approvals. Information from off label use of a medication outside of a clinical study is not sufficient for drug approval."
Managing Your Healthcare
Help your patients manage their FOP with easy to understand informational fact sheets, videos, care tools, and webinars.
