The FPIES Global Registry Getting to Know the Patient Registry Part 2 of 3 in Registry Series What is a Patient Registry? Also referred to as a “disease registry” or “clinical registry,” a Patient Registry is a program that collects and stores data related to health information for a specific purpose and in Read more…
The FPIES Global Patient Registry An Introduction and Overview Part 1 of 3 in a Registry Series In November 2013, we at The FPIES Foundation presented the first-of-its-kind FPIES Global Patient Registry, via the Patient Crossroads CONNECT program. Some Key Terms: Patient Registry: Also referred to as a “disease registry” or “clinical registry,” Read more…
My daughter Nicole was diagnosed with FPIES when she was 4 years old. She had struggled with chronic issues since 18mths of age and we were more than thankful to have a diagnosis. Nicole has several safe foods, including Chicken, Eggs, EleCare Jr Vanilla, Apples, celery, zucchini, carrots and peas. Read more…
This post is to honor fathers of children living with FPIES by sharing these stories of the journey of their families. Sharing both trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well. We welcome this unique Read more…
She’s 9-years old. She loves the A-Team and Selena Gomez. And, she has FPIES. Meet Sarah from “Sarah’s FPIES Clubhouse.” We recently had the opportunity to interview Sarah and her mom and learned that Sarah is one courageous little girl with a huge heart, a love for animals and a Read more…
Food Protein Induced Enterocolitis Syndrome (FPIES) is a recognized rare diagnosis – globally. From Rare Diseases Day, “A rare disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time, and rare in Europe when it affects fewer than 1 in 2000“. “Alone we are rare, Read more…
From the moment we hold our child for the first time, to catching them when they fall down on the playground, to helping them through food trials and reactions, one of our largest jobs as parents is simply: CARE. At the moment our child’s medical team meets him or her, Read more…
FPIES: Caring for the Caregiver Nichole L. Huff, Ph.D., CFLE Recently I read an article by the Family CaregivingAlliance on caregiver stress. As an introduction to the topic, the author compared the need to reduce caregiver stress to the safety rules given just before takeoff on an airplane—the ones that instruct Read more…
World Rare Diseases Day February 28, 2014 Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care. We are not alone. Here at The FPIES Foundation that is something we feel every parent and caretaker should realize. Not only are Read more…
Our children are the cornerstone of The Foundation. We strive everyday to educate, advocate and empower the families and medical professionals who support them The FPIES Foundation is excited to have recently launched the ‘Kids Spot.’ The ‘Kids Spot’ is designed with young children and their siblings in mind. It’s a Read more…