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 protected].
Patient Directory and Registry
We encourage those living with FOP to join both the FOP Registry and the FOP Patient Directory.
The online FOP Patient Directory is 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.
Create your profile for the FOP Directory.
Please contact Hope Newport, Family Services Manager, if you have additional questions.
The online FOP Registry is available at fopregistry.org. The registry is a global, voluntary database that collects demographic and disease information directly from individuals with FOP through a secure website. Every person living with FOP has unique information to share. The Registry collects this information to help further research to find treatments and, one day, a cure for FOP.
To contribute to the registry visit fopregistry.org and select “Join” to register and complete your Enrollment Survey.