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!
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!
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…
We love and appreciate the allergy friendly companies that provide foods to help expand our children’s diet. Today we would like to share a little about one of those companies, Amanda’s Own Confections. As always, be sure to contact the manufacturer to best determine whether or not the product may Read more…
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…
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
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…
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…
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…
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…
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…