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 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…
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…
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…
Your voice: Be a part of the first FPIES Global Registry! A message from Joy Meyer, Co-Director of The FPIES Foundation You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice. I am the Co-Director of The FPIES Foundation. I am Read more…