A 501c3 dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.
Joined September 2012
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The FPIES Foundation retweeted
The NORD® Claim Your Care expanded program is LIVE! Your one-stop resource for #HealthInsurance help – from navigating options to filing appeals – empowering #NORD Members and the public to advocate for patients and reduce barriers to care.
Learn more: claimyourcare.org/
#Healthcare #Insurance #PatientAdvocacy #ClaimYourCare
ALT Promotional image for NORD (National Organization for Rare Disorders) featuring a stethoscope and clipboard with a medical insurance form. Text highlights the availability of comprehensive health care resources and encourages accessing guidance now with a "Claim Your Care" slogan and an "Access Now" button.
The FPIES Foundation retweeted
Prof. Hideaki Morita gave a lecture at EAACI-APAPARI Joint Symposium at #EAACI2024. Many attendees gathered for his lecture on the research of FPIES. We would like to express our gratitude for the support from the #APAPARI and #EAACI.
@jsa_org @JSPACI_kouhou @FPIESFoundation
The FPIES Foundation retweeted
Latest publication by our group pubmed.ncbi.nlm.nih.gov/3879… & more coming soon that we brought to #EAACI2024! Pleasure to work with many talented &lovely colleagues @simona_barni @sonsolesinfante @ArasiStefania &more @EAACI_JM @ImperialNHLI
So thrilled&grateful to receive this generous grant from @FoodAllergy to explore #FPIES mechanisms& improve diagnostics! Huge credit to my amazing #Bio-FPIES collaborators in UK,Spain & Italy shorturl.at/p0NJ2 @ImperialNHLI @fedemartinon @_myrsini_ @jetpackjeth &many others
The FPIES Foundation retweeted
The rarest day of the year is finally here: it's #RareDiseaseDay! 🦓
Tag us in your posts today as you #ShowYourStripes and check out our website to add to our "Faces of Rare" dedication wall, download social media graphics, and more: bit.ly/2BrULms🦓
ALT Blue background with text reading, "Today is Rare Disease Day. Show Your Stripes for the 1 in 10 Americans with a rare disease." with cartoon zebras and NORD and Rare Disease Day logos.
The FPIES Foundation retweeted
It's almost #RareDiseaseDay—the highlight of our year!
Join us tomorrow for our social media takeover. We'll be giving charities a chance to spread awareness for their #RareDisease!
Have you discovered our Rare Disease #Awareness Calendar? Visit bit.ly/3I0P2WB.
The FPIES Foundation retweeted
A week ago today we were on the Hill to meet with #MNEA Champions @RepMcGovern and @RepRutherfordFL. Their dedication and yours will make #medicalnutritionequity a reality for those with #IEM and #GI conditions. It's #TimeforMNEA. Share your stories at nutritionequity.org
The FPIES Foundation retweeted
RARE Sibling
[1] loyal protector
[2] steadfast advocate
[3] devoted ally
[4] young carer
Give a shout out to an amazing #RareSibling you know and let the world know all about how awesome #RareDisease families are.
#Rare #RareFamily #RareCondition #Sibs #Siblings #YoungCarer
The FPIES Foundation retweeted
Show Your Stripes for #RareDiseaseDay! Grab a shirt or two and make a donation to NORD to support the 1 in 10 Americans with a rare disease: bit.ly/48WMa8v
Make your purchase by February 2nd so it arrives in time for Rare Disease Day! #ShowYourStripes
ALT Photo of NORD Rare Disease Day t-shirt, which says "Show Your Stripes for the 1 in 10 Americans with a rare disease" along with three zebras with orange, blue, and burgundy stripes.
The FPIES Foundation retweeted
Global Food Protein-Induced Enterocolitis Syndrome (FPIES) Awareness Day
#GlobalFoodProteinInducedEnterocolitisSyndromeAwarenessDay
#FoodProteinInducedEnterocolitisSyndromeAwarenessDay
#GlobalFPIESAwarenessDay
#GlobalFPIESAwarenessDay2023
#FPIESAwarenessDay
#FPIESAwarenessDay23
The FPIES Foundation retweeted
Today is #FPIES awareness day. My son has FPIES to peanuts. We'd never heard of it before he was diagnosed. – at Edinburgh, Scotland
The FPIES Foundation retweeted
Aswell as #AHP2023 day today, it’s also #GlobalFPIESDay. I had no idea what #FPIES was, until my daughter was diagnosed with it. It’s a stressful, complex, & challenging allergy, that you have to adapt to #raisingawareness #rareallergy
The FPIES Foundation retweeted
Today is Global FPIES day! A time to raise awareness and show support. We are very happy to be able to collaborate with @FPIESFoundation 😊
The FPIES Foundation retweeted
The United States is long overdue for a #foodlabeling overhaul. Urge your members of Congress to protect consumers and promote #healthy diet by passing the Food Labeling Modernization Act 👇
act.cspinet.org/a/ask-congre…
The FPIES Foundation retweeted
Your participation in research like this will help to build a picture of how FPIES affects babies/children and their families, and how they could be helped in future.
Follow this link for more information and to complete the survey:
imperial.eu.qualtrics.com/jf…
The FPIES Foundation retweeted
If there is anyone out there with a baby or child with FPIES that has not yet taken part in this survey on feeding difficulties in FPIES, please do take a look before it closes.
Are you a parent or carer for a child with FPIES? You may be eligible to take part in this important survey.
We are collaborating with researchers from Imperial College London and @FPIESFoundation to help carry out a research project on FPIES and feeding difficulties.
The FPIES Foundation retweeted
Are you a parent or caregiver of a child with #FPIES? You may be eligible to take part in the FPIES Feeding Survey! @FPIESFoundation is collaborating with researchers to find out whether and how feeding difficulties are present in #FPIES. Learn more: bit.ly/3LeHOiQ
The FPIES Foundation retweeted
This is fascinating insight into #FPIES aka food protein induced enterocolitis! @FPIESFoundation @FoodAllergyCAN @jacionline
An untargeted metabolomics approach to identify pathways associated with FPIES reactions suggests that activation of the purinergic pathway could connect allergic inflammation with vomiting. bit.ly/3FbFOpb
The FPIES Foundation retweeted
#FPIES or Food Protein Induced Enterocolitis often goes unrecognized in children and adults alike as symptoms may mimic other conditions. Here's a great resource to learn more! @foodallergyca allergiesalimentairescanada.… @FPIESFoundation @ACAAI #MedTwitter @AnnalsEditor @AnnalsAllergy
Is Food-Protein-Induced-Enterocolitis Syndrome (FPIES) being missed in adults? Check out this Perspective in @AnnalsAllergy by Drs. Bingemann, @SaraAnvariMD, Bartnikas, @Ruffner_MA, and @nowak_wegrzyn that address this issue! @ACAAI #MedTwitter
doi.org/10.1016/j.anai.2022.…
The FPIES Foundation retweeted
The Medical Nutrition Equity Act must pass to ensure that everyone has access to these treatments to sustain life with an IEM. #EquityRequiresAccess.
The FPIES Foundation retweeted
Last mth, 33 organizations endorsed a request to @CMSGov to include Medical Nutrition as an Essential Health Benefit (EHB) the ACA. #MedicalNutrition is the primary & sometimes only treatment for certain inherited metabolic & GI conditions. 1/2 bit.ly/mednutritionehb