The Advocacy Series

Patients and Families

The Advocacy Series

The Advocacy Series

The Advocacy Series helps people and families overcome barriers to receiving the support, access, care and resources they need by learning from other FOP community members and discussing practical tools for better problem-solving across multiple areas of life with FOP. We offer podcast, webinars and community panels for each topic covered.

Advocacy Series Community Panels and Webinars will be hosted on Zoom video conferencing and simultaneous translation** will be provided in the following languages:

Arabic, Bengali, Chinese (Simplified), Chinese (Traditional), Czech, Dutch, French (FR), French (CA), German, Hebrew, Hindi, Indonesian (Bahasa), Italian, Japanese, Korean, Polish, Portuguese (PT), Portuguese (BR), Romanian, Russian, Spanish (ES) + Spanish (MX), Swedish, Tagalog, Tamil, Thai, Vietnamese.

*Translation services and the Zoom video application can not be accessed at the same time on a single mobile device. If you're using a mobile device and want to access translation and see fellow attendees during a Zoom meeting, you will need a second mobile device or a computer to open translation services. With two mobile devices or a mobile device and a computer, you can participate in the Zoom meeting on one device and access written and audio translation on the other.

2024 Topic

  • Strengthening Your Support Network: Build a network of family, friends and resource experts to support you in facing new challenges and stressors related to FOP. Finding the right people to support you and sharing the right details to help them understand your needs takes time and skill.

2023 Topic

2022 Topics

  • Accessible College and Careers and Pursuing a Vocation: Make an educated decision about which college best meets your accessibility needs and hear from members of the community about choosing a career field that provides flexibility for living with FOP. 
  • Accessible Driving and Transportation: Learn strategies and resources to access various types of accessible public transportation some community members use to pursue activities outside of the home. Also covered in this topic are modification options and resources for personal transportation that may help FOP community members either drive their own vehicle for as long as possible or ride as a passenger in an accessible vehicle despite limited mobility or wheelchair use. 

2021 Topics

  • Advocacy: You Can Make A Difference: Learn how to build upon your strengths to communicate your needs and create an action plan for more effective problem-solving. 
  • Advocacy At All Ages: Advocacy begins by empowering children to overcome challenges rather than enabling them to rely on others. Learn how children, teens and young adults can start advocating for their needs at different developmental stages. 
  • Advocating in a Medical Setting: Take control of your medical journey by learning the tools you need to be an effective member of your health care team. 
  • Advocating for Mobility and Independence: Learn how to access the tools, equipment and transportation you need to get outside and engage with those around you.


For more information about the program or to share your experience as an advocate, please contact Hope Newport, IFOPA Family Services Manager, or Melissa Davis, Family Services Coordinator.

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