The FPIES Foundation joined as the National Organization forRare Diseases (NORD) andTexas Children’s Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease. NORD started the chat with some statistics that show rare diseases aren’t that rare. They 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, Read more…
What can you tell me about NoTube Organization? NoTube supports families with children with tube dependency, working with the “Graz model of tube weaning”. We help children who are “stuck” on a feeding tube in absence of a medical need for 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 Read more…
**August 2017 Update: Kindrdfood has closed its doors. Tara is still seeing patients through video conference, please contact her at taramccarthyrd@gmail.com A company has emerged to offer help to families who have to manage changes in their diet due to a medical Read more…
Contains: FIVE ingredients: millet, water, safflower oil, pure maple syrup, and mini-chocolate chips. Does NOT contain: egg, baking soda, baking powder. Inspired by a recipe from a fellow FPIES mom (and her blog), and her recipe for Merry Muffins, I learned to create several Read more…
Thank you so much for your impact on making Global FPIES Day such a success! Our education, support and awareness efforts, coupled with the impact of your participation, reached a multitude of individuals affected by FPIES, their families, and the Read more…
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 Read more…
According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis. A year to diagnosis. A year of experiencing symptoms and reactions. Read more…
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 Read more…