Patients and Families
FOP impacts the entire family — it isn't restricted to stressing the individual with FOP. The Resilient Living program focuses on the emotional well-being of families — including siblings, caretakers, spouses and partners — giving them the skills to be able to bounce back from the challenges they face in life. Learn strategies of how to approach FOP and its challenges in a way that is productive rather than feeling helplessness.
Watch the Intro to Resiliency Webinar
Learn about the 10 facets of resilience that serve as the foundation of the Resilient Living program and future opportunities to benefit from this IFOPA program. The webinar was presented by Hayley Stolzle, Resilience Program Coordinator at Turning Point and Hope Newport, Family Services Manager at the IFOPA.
**The webinar was recorded live in English but can be viewed with translated subtitles. For directions on how to add subtitles in your preferred language visit this page.
Get involved in the Resilient Living Program
1
Watch for our posts on social media to implement resilient practices in your day-to-day living.
2
Take part in our pain management and peer support programs being offered in 2023.
Complete our Brief Survey to Receive more Details
3
Learn how to incorporate habits that support your mental and physical well-being.
4
Participate in the Friendship Over Pages Book Club to connect with other members of the community and learn more about practicing resilience.
Check out our library of FOP Family resiliency resources
Energy Medicine Immune Boosting Techniques
5 Steps to Practicing Resilience with Your Child
Resilient Living Video Playlist
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For additional resources on Understanding Career Opportunities and Employment Benefits we highly recommend exploring this guide created by Global Genes. Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases. |
This program is funded by a Global Genes RARE Patient Impact Grant.
