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…
Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact– medical and non-medical– this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family’s story may differ in Read more…
Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories– we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in Read more…
FPIES Foundation joining forces with Rare Diseases Community and Global Genes 350-million voices to make a difference ‘You are not alone.’ It’s a mantra of sorts here at the FPIES Foundation. You are not alone on food trials, you are not alone at 3 a-m with a sick child, and you Read more…
Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives”. (What is a Rare Disease) The theme for Rare Disease Day 2015 Read more…
In October, The FPIES Foundation was honored to attend the Annual North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) meeting. NASPGHAN brings pediatric training and advancements to this yearly conference. We had the privilege of meeting and speaking with several hundred compassionate Pediatric Gastroenterologist Practitioners, Nurses, and Nutrition Read more…