Rare in How We Care The theme of this year’s Rare Diseases Day was “Show Your Stripes.” I was so excited when I first learned this– I feel like this theme really reflects our rare community, particularly our FPIES community, where I see all of you showing your stripes each Read more…
Make Like A Zebra and #ShowYourStripes Every year, my daughters and I look forward to Rare Diseases Day. It is such a great opportunity to raise awareness, but I feel like it also is a wonderful reminder to them that they are not alone– there are kids all over the Read more…
This gap between patients and clinicians was evident upon my son’s diagnosis, but was becoming more clear the more we learned about FPIES. Fortunately, the FPIES Foundation created the FPIES Global Patient Registry
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…
Over the last four years, we have watched our little ones grow right alongside the Foundation. So many of the new families we “met” after our founding now contact us with their inspirational stories– we proudly hear the stories of children outgrowing FPIES and the stories of children thriving in Read more…
This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES. We, at the Foundation, found the event very encouraging and asked them to share their story… Chase’s FPIES Challenge started out as a way for me to help my friends Read more…
FPIES Foundation joining forces with Rare Diseases Community and Global Genes 350-million voices to make a difference ‘You are not alone.’ It’s a mantra of sorts here at the FPIES Foundation. You are not alone on food trials, you are not alone at 3 a-m with a sick child, and you 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…