The FPIES Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face. For this 10th Rare 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 needs, driving change to improve the lives of those living 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…
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…
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…
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…
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…