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
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…
Support our Cause
10 Things You Can Do to Spark the Conversation About Rare Diseases
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…
Helping families
Helping Families Navigate the Emergency Room with a Rare Disease
The FPIES Foundation joined as the National Organization forRare Diseases (NORD) andTexas Children’s Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease. NORD started the chat with some statistics that show rare diseases aren’t that rare. They say 1 in 10 Americans are affected by some sort Read more…
Support our Cause
Create a Conversation about FPIES for Rare Disease Day 2016!
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…