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, at The FPIES Foundation, love to follow the research! These are our top 10 picks for FPIES articles of 2019 (in no particular order). Each of these articles brings some new data or novel idea to the ‘table’. We are so thankful to all of the practitioners and researchers 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
In 2013 we, at The FPIES Foundation, presented the first-of-its-kind FPIES Global Patient Registry through the Patient Crossroads CONNECT program a patient registry platform company. Last year, Patient Crossroads underwent a rebranding to become AltaVoice. Through Altavoice we were introduced to the Power of the Patients Insights Network (PIN) which enables us to further amplify the Read more…
More Insights from the Global Patient Registry by Hilary Lagerwey Last year we shared some statistics gleaned from the data provided by FPIES families across the globe. The Global Patient Registry is a platform to collect information such as medical history, family history, and specific symptoms. The purpose behind this data repository is Read more…
FPIES Trends and Insights: Caregiver/Patient Reported Data from the Global Patient Registry By Hilary Lagerwey For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis. First of all, we want to Read more…
According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis. A year to diagnosis. A year of experiencing symptoms and reactions. A year looking for answers and support. The FPIES Foundation is Read more…
The FPIES Foundation invites everyone to participate in the first official celebration year of Global FPIES Day on October 14th! FPIES (Food Protein-Induced Enterocolitis Syndrome) is a rare type of food allergy and the need for awareness, education and support around the globe is great. Newest MAB member, from Spain, Sergio Read more…
The FPIES Foundation is excited to celebrate its third anniversary of empowering, educating and helping families around the world to navigate life with Food Protein-Induced Enterocolitis Syndrome (FPIES). This past year was packed with numerous accomplishments, big and small. The FPIES Foundation achieved its goal of launching a first-of-its-kind FPIES 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…