Helping families
FPIES Workbook for Parents and Caregivers: An Interview
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!
Inspirational stories
Rare in How We Care
Rare in How We Care The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each Read more…
Helping families
Make Like A Zebra and #ShowYourStripes
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…
Helping families
FPIES: This is How We Do It
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…
Helping families
Parental psychosocial distress: A needs assessment for parents of infants 0 to 1 year with food allergies and intolerances
Parental psychosocial distress: A needs assessment for parents of infants 0 to 1 year with food allergies and intolerances. A food allergy diagnosis can be a life-altering experience. The stress involved for the child and their parents has been underappreciated. We recently learned of a new research study examining parental Read more…
Helping families
Out and About with FPIES: Or, Faking Spontaneity through Obsessive Planning, Part One
Before I had kids, I always assumed we’d be one of those families that were always on the go – playing at parks, exploring our neighborhood, doing fun outings like museums and the zoo. And then, you know, FPIES. Without getting into too much detail (let’s just say the words Read more…
Helping families
Out and About with FPIES: Or, Faking Spontaneity Through Obsessive Planning, Part Two – the Freezer Edition
Emergency bread. This may sound like a bizarre concept to families without allergies, and possibly even to those with. The first time I used the term, my husband* looked at me like I was crazy. “What’s emergency bread?” I explained what I meant by it, but it didn’t really Read more…
Helping families
Paying Medical Bills as Simply as Possible
Paying Medical Bills as Simply as Possible By Margaret Hancock For those navigating FPIES – or any rare disease – hospital, specialist, nutritional, and additional medical bills can be quite confusing and time-consuming. I am grateful for a brief stint that I had with an insurance firm as I learned through Read more…
Helping families
Preparing for a Food Challenge
When navigating through the FPIES reality, one of the more regular activities is a food challenge. When we began introducing foods to our son, several challenges resulted in days worth of medical attention. Now, each and every food introduction we do (whether the food is a typical FPIES trigger or Read more…
In The News
Global FPIES Day 2017: Steps4FPIES
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…