COVID-19 Information and Resources for Individuals with FOP

Read the latest news from the IFOPA and FOP Medical Experts:

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

STOPFOP Recruitment Paused

Coronavirus (COVID-19) Precautions for FOP Families (Updated March 13, 2020)

What Should FOP Families Do to Protect Against Coronavirus?

Other Preventative Health Resources:

  • Recommendations for proactive steps to maintain and improve your lung health can be found here.
  • Print this sign for alerting visitors of you our 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:

 Mental Health Recommendations:

    • 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

For an extensive list of COVID resources on the topics of finance, mental health, support services, talking with children and other topics visit: https://globalgenes.org/coronavirus-covid-19-resources/

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.

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