This website is intended for U.S. audience only.

Go to HCP Site

This website is intended for U.S. audience only.

Community and resources

Although you may not know anyone else who’s affected by fibrodysplasia ossificans progressiva (FOP), you are not alone.


There’s a strong and vibrant global community of people living with or caring for someone with the condition. Patient advocacy groups can help you speak with, or hear from, others who may be in a similar situation

 

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Not sure where to start?

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The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a non-profit organization, formed with the goal of bringing together people living with FOP.1


Today, the IFOPA also provides education and support for people living with FOP and their families.1

Clinical trials in FOP

Doctors and researchers are working hard to find additional ways of managing FOP that go beyond palliative and preventative strategies,2,3 and many clinical trialstooltip-imagetooltip-imageClinical trials
Clinical trials are research studies that test medical or surgical interventions in people, in order to determine if they are safe and effective.5
are ongoing.2

*Inclusion of a clinical trial in the list does not constitute or imply its endorsement, sponsorship or recommendation by Ipsen. Specific entry requirements exist for all trials, and not all patients may be eligible.

FOP Registry

The FOP Registrytooltip-imagetooltip-imageRegistry
Patient registries are organized systems that collect information about groups of patients who share the same condition or experience.6
, independently operated by IFOPA, was started in 2015 and is today the largest database of medical information about FOP and those who are living with the disease. It is a vital tool for helping doctors better recognize the complexities of FOP and improve patient care.4

LEARN MORE ABOUT THE FOP REGISTRY LEARN MORE

Who are the members of the FOP care team?

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Healthcare professionals from a range of different specialties may be needed to help provide the best care possible for someone with FOP.2

Read a guide to the network involved in FOP care to learn more about the roles each specialty has.

READ THE GUIDE

1. International Fibrodysplasia Ossificans Progressiva Association. Available at: www.ifopa.org. 2. Kaplan FS et al. Proc Intl Clin Council FOP 2022;1:1–120. 3. Di Rocco M et al. Orphanet J Rare Dis 2017;12:110. 4. FOP Registry. Available at: www.fopregistry.org. Accessed August 2023. 5. NIH. What are clinical trials and studies? Available at: www.nia.nih.gov/health/what-are-clinical-trials-and-studies#what. Accessed August 2023. 6. Gliklich RE, Dreyer NA, Leavy MB, editors. Registries for Evaluating Patient Outcomes: A User's Guide [Internet]. 3rd edition. Rockville (MD): Agency for Healthcare Research and Quality (US); 2014, Patient Registries. Available from: https://www.ncbi.nlm.nih.gov/books/NBK208643/.