Patients and Families
How do I make changes to my Directory listing?
Send an email with your changes to [email protected] and reference the FOP Patient Directory.
How do I add my Preferred Name/Nickname?
Send an email to [email protected] and reference the FOP Patient Directory.
How do I get a username and password to access the FOP Patient Directory?
When patients (or their parents for those under 18) complete a Patient Directory profile, they will be issued a username and password. You can complete your profile here.
How do I join the IFOPA or renew my membership?
When those living with FOP complete their FOP Patient Directory profile, there is a checkbox that asks if you'd like to become a member of the IFOPA.
Parents and others that are supportive of the FOP community can join or renew their IFOPA membership at ifopa.org/connect.
There is no membership fee to join the IFOPA.
I joined the FOP Registry. Is the FOP Patient Directory the same thing?
Great question! The FOP Patient Directory is not the same as the FOP Registry. The Directory is a password-protected site at fopdirectory.org for patient use only.
The disease experience data in the FOP Registry is aggregated and provided as summary reports to researchers as a tool for studying FOP and potential treatments. The FOP Registry is a critical tool in the search for treatments, and one day a cure, for FOP. You enroll and complete 6-month follow-up surveys at fopregistry.org.
We encourage those living with FOP to join both the FOP Registry and the FOP Directory.
Who can access the FOP Patient Directory?
Access is limited to patients, parents of patients under 18, and spouses/partners. There are some parents of adults living with FOP (anyone 18 and over) that would like to have access to the Directory. This permission may be granted by the FOP’er to their parents at their discretion.
The IFOPA does not give physicians, researchers or industry representatives access to the FOP Patient Directory.