Truly a life changing diagnosis (for worse and better!) My son was first diagnosed with FPIES 16 years ago. He was 2 months old when he had his first hospitalization as a result of his vomiting. As with many kids with FPIES, he would vomit 65-70 times over a three […]
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 […]
It was a beautiful afternoon and my girls were so excited– the long-awaited baking had begun! Since they both have separate safe food lists and separate baking equipment, each girl got her own turn in the kitchen with mama. My eldest tied on her apron, read the recipe, and started […]
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 […]
[bg_faq_start] This year for Food Allergy Awareness Week, we join in FARE’s call to our communities–“React with Respect.” When there is lack of awareness and lack of respect involved in treating FPIES reactions, inadequate care for our loved ones can occur. This can snowball into creating greater stress, as well as increased […]
Thank you for your commitment to providing valuable and individualized care to patients and their families living with FPIES. We are very glad that you have taken an interest in The FPIES Foundation and the resources we can provide for you and your patients. We at the FPIES Foundation understand […]
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 […]
Authorship and Review of All Website Content: The FPIES Foundation is committed to offering credible and up-to-date information about the FPIES diagnosis, management strategies, and the existing body of research. Unless otherwise noted in the text of an article or document, all content on our websites (www.fpiesfoundation.org and www.fpiesday.com) and […]
FPIES Trends and Insights: Caregiver/Patient Reported Data from the Global Patient Registry By Hilary Lagerwey For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis. First of all, we want to […]
The FPIES Foundation is excited that the Centers for Disease Control (CDC) now recognizes Food Protein-Induced Enterocolitis Syndrome (FPIES), and has appointed it with diagnostic code K52.21, among allergic digestive diseases. This is a step that has the building blocks to make diagnosis and medical/formula coverage easier for a lot of children […]