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…
We are so excited to share with you that a children’s book about life with FPIES was recently published! The book, “FPIES – The Mystery that Made My Brother Sick“, was written by a fellow parent of a child living with FPIES and is a real-life story about her son. 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!
Make Like A Zebra and #ShowYourStripes Every year, my daughters and I look forward to Rare Diseases Day. It is such a great opportunity to raise awareness, but I feel like it also is a wonderful reminder to them that they are not alone– there are kids all over the Read more…
As we celebrate our seventh anniversary at The FPIES Foundation, I have been looking back over the years since our beginnings and since the start of my own family’s FPIES journey. I smile as I remember families that have come and gone from our community. Even though they may have Read more…
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…
The FPIES Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face. For this 10th Rare 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…
It was a beautiful afternoon and my girls were so excited– the long-awaited baking had begun! Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama. My eldest tied on her apron, read the recipe, and started Read more…
FPIES Trends and Insights: Caregiver/Patient Reported Data from the Global Patient Registry By Hilary Lagerwey For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis. First of all, we want to Read more…