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…
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…
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
In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform company. Last year, Patient Crossroads underwent a rebranding to become AltaVoice. Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the Read more…
It’s been a month since we celebrated Global FPIES Day and we’d like to take a look back at all we shared and accomplished together. Tools that Build Bridges This year’s theme was “Tools that Build Bridges” and we were able to provide some amazing new tools to help families 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…
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…