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Rare Diseases.

Support our Cause

10 Things You Can Do to Spark the Conversation About Rare Diseases

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…

By thefpiesfoundation, 6 yearsFebruary 2, 2017 ago
Support our Cause

Create a Conversation about FPIES for Rare Disease Day 2016!

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…

By thefpiesfoundation, 7 yearsFebruary 14, 2016 ago
FPIES Registry

The FPIES Global Patient Registry: Getting to Know Connect

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…

By thefpiesfoundation, 9 yearsJuly 29, 2014 ago
FPIES Registry

The FPIES Global Registry: Getting to Know the Patient Registry

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…

By thefpiesfoundation, 9 yearsJuly 21, 2014 ago
FPIES Registry

The FPIES Global Patient Registry: An Introduction and Overview

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…

By thefpiesfoundation, 9 yearsJuly 8, 2014 ago
In The News

Rare Diseases Day Awareness Success!

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…

By thefpiesfoundation, 9 yearsApril 2, 2014 ago
Helping families

FPIES: Caring for the Caregiver

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…

By thefpiesfoundation, 9 yearsFebruary 24, 2014 ago
FPIES Registry

Your voice: Be a part of the first FPIES Global Registry!

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…

By thefpiesfoundation, 9 yearsNovember 20, 2013 ago
https://youtu.be/JitPvOMjHlY
https://youtu.be/DDNVNbjLNhY

The FPIES Foundation is an Incorporated 501(c)(3) Non-Profit organization. The FPIES Foundation does not provide medical advice, diagnosis or treatment. Information provided is intended for supportive, awareness and educational purposes and not as medical advice.


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