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…
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…
Halloween is one of my favorite days of the year. I love holidays in general, and even though Christmas will always have a special place in my heart, there are some pretty big expectations wrapped up (pun intended) around December 25. Big extended-family get-togethers, possibly involving travel, a fancy dinner Read more…
A diagnosis of FPIES can be life-altering. So, when The Mighty asked our community for some of the things parents of children living with FPIES are doing, because of the diagnosis, that other people may not realize, the response was incredible. With over 150 million readers and thousands of contributors, Read more…
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…
Here at the FPIES Foundation, we are always on the lookout for other organizations that can help your child and family through the daily struggles and challenges of FPIES. We are therefore delighted to announce that we have recently partnered with the Children’sMedical Nutrition Alliance (CMNuA). To help you understand more Read more…
When Life Hits the Fan A guest post by Honor Genetski I’ve been getting my share of lessons in acceptance lately. I choose to see it this way rather than as a run of bad luck because without fail I am more grateful, more clear-seeing, and more resourced on the Read more…