Advice and Ideas from FOP’ers in the Work World
Career Talk is your place to learn how others living with FOP have navigated their career path, what led them to their current profession, the obstacles they have faced, adaptations they've found helpful and more.
Do you have career advice to share? You can participate by filling out a simple profile page and answering a few questions. You’ll be asked to include your basic contact information so that other FOP’ers can get in touch with their questions and keep the conversation going.
If you have ideas for additional ways to share your experiences, network virtually, or if you have topics you'd like to suggest for future career-focused articles, please email us at email@example.com.
International FOP Awareness Day is Monday, April 23, 2018. Generous friends of the IFOPA have agreed to help us raise $60,000 throughout the month of April in honor of FOP Awareness. They will match every dollar we receive—up to $30,000! But we must raise $30,000 to be eligible for the match.Read more
We are excited to announce that the 2018 FOP Family Gathering will be held Nov. 16-18 in Baltimore, Maryland. This is the first time an FOP meeting for families has been held in the Northeast since the year 2000. We hope you will join us.Read more
Making an impact one fundraiser at a timeRead more
2017 FOP Registry Annual ReportRead more
The online FOP Patient Directory is now available at fopdirectory.org. This helpful resource contains profiles for individuals with FOP, complete with photos and contact information, so you can get in touch with others in the community. The FOP Patient Directory is especially helpful for connecting with people who live near you or people of a similar age.
If you haven't completed your FOP Patient Directory profile, you can do so here.
Questions about the FOP Patient Directory? We've shared some of the most frequently asked questions below. If you have additional questions, please contact Shelly Oliver, Donor Relations and Administrative Coordinator, at firstname.lastname@example.org.
Frequently Asked Questions
How do I make changes to my Directory listing?
Send an email with your changes to email@example.com and reference the FOP Patient Directory.
How do I add my Preferred Name/Nickname?
Send an email to firstname.lastname@example.org 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 spouse/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.