Helping Families Navigate the Emergency Room with a Rare Disease

FPIES Foundation Joins in #RareErChat on Twitter

The FPIES Foundation joined as the National Organization forRare Diseases (NORD) and Texas Children's Hospital hosted a Twitter Chat aimed at helping navigate emergency room visits with a Rare Disease.

NORD started the chat with some statistics that show rare diseases aren't that rare. They say 1 in 10 Americans are affected by some sort of rare disease. A rare disease is one that affects fewer than 200,000 Americans.

Topics discussed included challenges children face in the emergency room. Many rare disease communities, including the FPIES community report struggling with doctors and nurses not familiar with the diagnosis.

Suggestions for parents include working with medical professionals on an ongoing basis to increase understanding and bringing information on a rare disease from a trusted source. For FPIES families the Foundation provides an emergency plan on our website. We also now offer the FPIES Foundation app free to download.

The discussion also gave tips on making children comfortable in the emergency room - having an ER bag at the ready filled with comfort items and medical records. Many hospitals also have a child life specialist you can ask for to help comfort and engage your child.

Other suggestions:

• bring a photo of your child at baseline
• ask ER staff to phone your pediatrician or lead specialist
• inform your child's daycare or school of your emergency room preference

To see the complete TweetChat search #RareErChat on Twitter.

Follow on Twitter:

@FPiesFoundation

@RareDiseases (NORD)

@TexasChildrens

This article written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7

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, together we are strong" speaks volumes for this rare allergy.  As we look ahead to Food Allergy Awareness Week - a time of allergy communities, families living with allergies, and medical providers work together to bring increased awareness to food allergies, while raising awareness to this rare type of food allergy, we want to thank all of YOU for the success of awareness raised during Rare Diseases Day! 

"Join Together for Better Care" was the international theme for 2014 Rare Diseases Day. 

The FPIES Community joined together and got involved in several ways: 

• You shared how you care! The FPIES Community shared how they care, in our social media pages – these were compiled in a blog post. 

• You read and shared "Caring for the Caregiver" by The FPIES Foundation guest blogger, Dr.Nichole Huff. 

• You raised & joined hands!  Families and friends printed, colored, and created photos with Rare Diseases Day themes. Honoring the day with photo submissions on our Facebook page for increased awareness of this rare food allergic syndrome “looks” like.  You can see several of them on our Kids in Action page!  Others submitted directly to Rare Diseases Day 

• You raised awareness in social media - changing profile pictures to honor the day with Rare Diseases Day USA handprints logo or I Love Someone RARE Global Genes customized logo, and sharing the Foundation Rare Diseases Day banner (pictured below), Twitter messages (link) about honoring the day and sharing photos, several blog posts written and shared. 

• You shared your story – FPIES Foundation Inspiring Families page grew with the latest submissions while others submitted directly to Rare Diseases Day: 
• My Son’s Journey with FPIES 
• FPIES from the UK
• Our Little Man and FPIES 

• The FPIES Foundation is honored to be listed among the rare diseases advocacy groups on the Friends of Rare Diseases Day page. 

• Participation for rare diseases like FPIES during a Rare Diseases Day chat on Twitter "Conquering Rare Diseases", a tweetchat with ABC News' Dr.Richard Besserwith.

•  Maureen Gantt, a parent of a child with FPIES even involved her entire class!, "...on this [RDD] day we researched what it means to have a rare disease, and wrote a paragraph about it, and then they each drew the hand logo on their poster. Then their job was to take their poster home and read their paragraph to their families!!"  Thank you Maureen! 

• The FPIES Foundation was honored with several Rare Diseases Day fundraisers for FPIES awareness with donations to benefit the mission of The FPIES Foundation.  Thank you donors!! 

• The FPIES Foundation Co-Director Amanda LeFew was interviewed for this two-part series in Psychology Today: "What You Can Do Today to Stop Misophonia Suffering" and "What You Can Do to Stop Miso Suffering Part II"

• The FPIES Foundation is a partner organization with Rare Diseases Day and our events were listed on their events page, for increased awareness to this rare food allergy.   

• Through our Foundation Alliance with Global Genes, "Connect with The FPIES Foundation for Rare Diseases Day Events" was published on their website, bringing FPIES further global recognition.

One of the biggest strengths of the FPIES community is the support and compassion shared by its members.  Your involvement in Rare Diseases Day once more upheld these values and our community's dedication to one another.  Truly, as we move ahead to Food Allergy Awareness Week in May, we will continue to be a community that is not only rare in diagnosis, but also rare in it's profound advocacy, empathy and commitment to bettering the lives of those affected by FPIES, each and every day. 

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

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?

• Download and display RDD logos: 
• Rare Diseases Day 

• NORD 

• Global Genes 

• 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 contact@thefpiesfoundation.org 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:

World Rare Diseases Day 

Rare Diseases Day USA 

Global Genes

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