Friday, January 31, 2014

Join Together for Better Care: Rare Diseases Day 2014

World Rare Diseases Day February 28, 2014

Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to
Join Together for Better Care.

We are not alone. Here at The FPIES Foundation that is something we feel every parent and caretaker should realize. Not only are there other families dealing with the same challenges FPIES poses, but if you add in other families also dealing with a rare disease the numbers are staggering.
Rare Diseases Day 2014 is fast approaching and this year we encourage the FPIES community to join your voices with these other families. Our diseases are different, but many of our struggles are the same and together our voices are strong and clear.
Rare Diseases Day was created and is coordinated internationally by EURORDIS. It was started by patient organizations and continues to be patient led. It is a great way to let decision-makers know about the challenges and impact facing a family dealing with a rare disease like FPIES.
Did you know there are 6000 different rare diseases affecting over 60 million people across Europe and North America alone??? EURORDIS tells us, "Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilize the care patients and families need and deserve."

How Can You Get Involved?

  • Wear that you Care:
“The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™. Get your Care about Rare ribbon here.  

  • Join Hands: Raise and Join hands to show your solidarity with rare disease patients around the world! Upload your photo directly to RareDiseases Day, share it with us on FB, or send to us for FPIES Community display submission to HandprintsAcross America, as part of Rare Diseases Day USA. 
  • Show support in Social Media:

ü  Join us on Facebook and ‘like” Rare Diseases Day and Global Genes Project
ü   Retweet and share rare disease news from Rare Diseases Day and Global Genes on Twitter, use hashtags #raredisease,  #Careaboutrare and #WRDD2014 
ü  Check in on YouTube: Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel. 

  • Tell your story:
    • FPIES Foundation Inspiring Family Stories page - Sharing both our trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well.  This is a unique opportunity for families to learn from one another and continue to grow together as a supportive community.  Write to us at for more information on joining the Inspiring Families!
    • With Rare Diseases Day directly – upload your photos, video or submit story here
    • In a “Patient Letter to Representative” - fill out the form and fellow rare disease advocates from Global Genes Project will hand deliver your personal story with your “legislative ask” to your members of Congress. 
  • Involve your local Media – write and share your story and what Rare Diseases Day means to you. The media is the best way of reaching the general public and serves to shape the opinions that will convince policy makers.

For more ways to get involved:

Global Genes

This post was written by the Executive Board of The FPIES Foundation 

Sunday, January 19, 2014


Our children are the cornerstone of The Foundation. We strive everyday to educate, advocate and empower the families and medical professionals who support them 

The FPIES Foundation is excited to have recently launched the ‘Kids Spot.’  The ‘Kids Spot’ is designed with young children and their siblings in mind.  It’s a place where FPIES is explained in simple terms and offers young children a way to understand this rare allergy and help a loved one suffering from it.  It’s also a place where kids can just be kids, a fun interactive way to see that they are not alone.

“FPIES is a diagnosis that affects the whole family,” says Foundation Co-Director Amanda LeFew.  “Meal time can be turned upside down, new snack and eating restrictions may be placed on older children, and social engagements where food is present could be limited. In some cases FPIES symptoms continue beyond the toddler years and we feel it’s important for these children to know there are others out there like them. The ‘Kids Spot’ is designed to be a safe haven for these families looking for ways to teach young children about FPIES.”

FPIES is a rare and often difficult diagnosis. It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

Visiting the ‘Kids Place’ you will find:

     What is FPIES to me?  A glossary of FPIES terms with easy ways to explain what is going on to a young child

     Resources for school age students - including vital information for putting a Section 504 plan in place to keep your child safe at school

     Supportive Siblings - an area designed with brothers and sisters in mind.  An FPIES diagnosis can leave these children wishing they could help and understand more about what is going on

     Interactive support just for kids - Your child can fill out and share our “FPIES is Rough, but I am Strong” mini-book to chart their FPIES journey.  FPIES children and their siblings are also encouraged to share art work on our Brag Board.  Food Allergies can’t curb these budding talents!

Even young children can help spread FPIES awareness and help others see that FPIES is only a diagnosis, not a definition.

This post was written by the Executive Board of The FPIES Foundation