A guest post by Laura Benjamin, MD. No one expects to find themselves in the back of an ambulance with their six month old baby during a relaxing Florida vacation, but that’s exactly where I ended up. My husband and I, both doctors, and three other couples, all also doctors, Read more…
This spiral-bound Workbook was created specifically for families managing FPIES, to help parents and caregivers stay organized and keep track of everything in one place!
This gap between patients and clinicians was evident upon my son’s diagnosis, but was becoming more clear the more we learned about FPIES. Fortunately, the FPIES Foundation created the FPIES Global Patient Registry
This post is inspired by an FPIES article appearing on The Mighty “What I’ve learned as a mother of a child with FPIES”. At the end of the article, the author mentions her ability to know the cross contamination of common grocery store items. When we shared this article from Read more…
We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether Read more…
It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together. Tools that Build Bridges This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families Read more…
More Insights from the Global Patient Registry by Hilary Lagerwey Last year we shared some statistics gleaned from the data provided by FPIES families across the globe. The Global Patient Registry is a platform to collect information such as medical history, family history, and specific symptoms. The purpose behind this data repository is Read more…
This year we will be celebrating the third annual Global FPIES Day on October 14th. Once again we are encouraging you to find your 14! Reach out to friends, family, or community members and get involved this Global FPIES Day with one or more of these 14 suggestions. #1. Create Read more…
Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact– medical and non-medical– this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family’s story may differ in Read more…
On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses. The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living Read more…