Happy 2021 to all! Now a full month into our New Year, we want to invite our community to join us in resolutions to spread FPIES education and awareness throughout 2021! With the state of the pandemic and many of us being homebound, outreach may be a bit of a Read more…
We are so excited to share with you that a children’s book about life with FPIES was recently published! The book, “FPIES – The Mystery that Made My Brother Sick“, was written by a fellow parent of a child living with FPIES and is a real-life story about her son. Read more…
Raise Awareness to FPIES with custom wristbands! With food allergy and FPIES allergy education and awareness days approaching, wristbands can be a great way to wear your awareness. We have teamed up with WristbandBros.com to give one lucky family living with FPIES a chance to win 200 free wristbands and a free design consultation! 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…
The FPIES Global Patient Registry Getting to Know CONNECT Part 3 of 3 in Registry Series What defines the CONNECT program? Patient Crossroads’ CONNECT program is, “a registry platform, which allows patients around the world to join others in reporting their own experience of disease.”– From the Patient Crossroads Advocacy Brochure According Read more…
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…
Feeding Tube Awareness Week®, launched in 2011 by the Feeding Tube Awareness Foundation, is a unique opportunity to raise awareness about feeding tubes. There are several reasons a child may need a feeding tube. Food allergies can be one of those reasons and some infants/children living with Food Protein Induced Enterocolitis Syndrome Read more…