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)
Other Preventative Health Resources
- NEW: Register to attend a COVID-19 Webinar hosted by FOP Medical Experts from the US and around the world to hear a status update on COVID-19 in their respective countries, vaccine options and vaccine protocol. Click here to register for the April 1 webinar at 9:30 AM in EDT/13:30 GMT.
- NEW: Watch a recording of the recent webinar 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.
- NEW: Read about a new COVID trial taking place in South Africa offering subcutaneous and oral applications.
- 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 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.
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:
- 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
- NEW: Check out the IFOPA community social events and connect with members of the FOP community through fun-focused activities hosted with Zoom video conferencing.
- There are a variety of resources available online for children who are no longer able to attend school or daycare.
- Adult-specific online activities
Resources for Financial Support
- NORD's COVID-19 Critical Relief Program provides financial relief that may be utilized to support critical, non-medical needs for members of the rare community affected by the COVID-19 pandemic.
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.