Career Talk
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].
Lifetime Grant Amount Increases for the Harold & Elaine Kaplan Quality of L.I.F.E. Awards
Those Living With FOP Now Eligible for up to $1,800 USD
Read moreImportant Press Release and Letter from Ipsen Announcing They Will Reinitiate Dosing in the MOVE Trial
Dosing to begin again in patients 14 years of age and older currently enrolled in the trial
Read morePatient 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.
COVID-19 Information and Resources for Individuals with FOP
Latest News from the IFOPA and FOP Medical Experts
Watch the COVID-19 and FOP Webinar recorded on April 1. The webinar was led by FOP expert physicians from around the world. Access the webinar and COVID-19 resources shared during the event
International Clinical Council on FOP Issues Updated COVID-19 Guidelines for FOP Families (March 18, 2021)
Coronavirus (COVID-19) Precautions for FOP Families (Updated July 17, 2020)
International Clinical Council on FOP Updates COVID-19 Precautions for FOP Families (March 27, 2020)
International Clinical Council on FOP Issues COVID-19 Precautions for FOP Families (March 17, 2020)
STOPFOP Recruitment Paused (March 17, 2020)
Coronavirus (COVID-19) Precautions for FOP Families (Updated March 13, 2020)
What Should FOP Families Do to Protect Against Coronavirus? (March 6, 2020)
Other COVID-19 Informational Resources
- Watch a recording of the March 2021 webinar National Organization of Rare Disorders (NORD) COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community. This special webinar with leaders from the US Food and Drug Administration (FDA) and the Centers for Disease Control (CDC) discussed the recently authorized COVID-19 vaccines.
- Read about a new COVID trial taking place in South Africa offering subcutaneous and oral applications.
Other Preventative Health Resources
- Recommendations for proactive steps to maintain and improve your lung health can be found here.
- Check out this resource from the The Resilient Living Program that teaches Energy Medicine techniques through short videos and written descriptions aimed at boosting your immune system and supporting your self-care routine.
- Consider implementing out these recommendations by community member Nancy Sando for managing personal care attendants:
- Wash hands immediately upon arriving at the house.
- Consider pausing work for any caregivers who live with someone who works at the hospital, as an EMT or in another health field that could be exposed.
- Remind staff that if they feel sick they should stay home.
- Have a plan in place if you have to reduce the number of caregivers. (I.e. instead of 3 - 8 hour shifts, 2 - 12 hour shifts)
- Continue to follow and adhere to all CDC guidelines (including wearing cloth face coverings when in crowded public places)
- Print this sign for alerting visitors of you or your loved one’s high risk. If you do not have access to a printer please email Hope Newport, Family Services Manager to receive a copy of this resource in the mail.
Click on the photo to download a printable version.
Resources for Social Distancing and Isolation
NEW: Check out these 10 Tips to Help You Master Your Telemedicine Visit: A Patient Guide.
Mental Health Recommendations:
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- For general suggestions on ways to cope with the effects of social isolation see these recommendations shared by the American Psychological Association
- Our Odyssey, an organization supporting young adults with rare or chronic illnesses is hosting multiple virtual hangouts over the coming month. Check out the schedule and register to participate here!
- Looking for some helpful information on how to talk with your child about COVID-19? Check out this resource.
- During times of uncertainty getting good quality sleep can be challenging. Check out these resources including a podcast about how to get back on track for a restful night of sleep.
- Activities for staying busy at home
- There are a variety of resources available online for children who are no longer able to attend school or daycare.
- Adult-specific online activities
For an extensive list of COVID resources on the topics of finance, mental health, support services, talking with children and other topics visit:
Educate Others About Social Distancing and FOP
Want to encourage others to practice social distancing and teach people something about FOP at the same time? Feel free to share the photo below on social media. Thank you to Gail Jenkins, grandmother of Samson Hixon for creating and sharing this clever idea!
Right-click and "Save image as" to use this photo on your social media channels.
