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…
From every corner of our world, COVID-19 has impacted us all in one way or another. As I sit here in my living room, in a state particularly hard hit, the evidence of this impact is all too clear. The stress, the risk of catching this illness, the changes in Read more…
Food Allergy Awareness Week (FAAW) is May 10-16 this year. Every year we join with Food Allergy Research and Education (FARE) to honor FAAW. We wanted to share some of the ways you can get involved and help build the growing awareness of different types of food allergies, such as Food Protein Induced Enterocolitis Syndrome (FPIES).
Planning meals for children can be challenging. You have to come up with a dish that is not only appealing to them but is also packed with nutritious ingredients that sometimes your child probably doesn’t like, and these difficulties grow tenfold when it comes to prepping meals for children with 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!
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