Community and resources
Not sure where to start?
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
Explore the links below to see what IFOPA has to offer:
Meet other people living with FOP
Discover useful resources
Tips for communicating with the FOP community
Other patient advocacy groups exist around the world. For more information, visit FOP International Organizations.
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 trials
Clinical 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
Registry
Registry 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
Who are the members of the FOP care team?
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.
Find a physician familiar with FOP near you
Our regional care center database contains the names and contact details of physicians and institutes who are familiar with caring for patients with FOP. Use the map to search for a physician in your area.
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/.
