Advocating for Your Child in the Healthcare System

FPIES is a rare diagnosis that is often not fully understood, which can make it challenging for parents and medical providers. The FPIES Foundation partnered with ThriveRx to present “Advocating for your child in the Healthcare system” (PDF). The purpose of the webinar is to help families navigate the healthcare system by providing advocacy actions, tools, and resources to assist them and their providers as they care for their children living with FPIES. Download a PDF of this webinar to view details and links to additional resources/references for your convenience.

You Will Learn:
  • Actions that an effective advocate takes
  • Helpful tools to utilize when advocating
  • How to successfully coordinate care
  • Strategies for strengthening your child’s voice

Whether your visit is for a diagnostic work-up or for follow-up care, being prepared for appointments can help you to get the maximum benefit of the time spent with your child’s provider.

We hope these tools can help!

Page published: Aug 1, 2012. Updated: June 6, 2018. Copyright © 2012, The FPIES Foundation

Raise Your Voice!

Show Support for Better Medical Nutrition Coverage

The Medical Nutrition Equity Act (S-1194, HB-2587) is a piece of legislation currently being championed by medical professionals and patient advocacy groups that aims to improve coverage of medical nutrition (such as elemental formula) for individuals affected by a variety of conditions, including FPIES. Learn how you can get involved TODAY!