10 Things You Can Do to Spark the Conversation About Rare Diseases

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 Disease Day, we compiled a list of our top 10 things you can do to help spread awareness this Rare Diseases Day: 

#1. Share a Rare Disease Fact on social media. 

#2. Print and color a rare disease day coloring page and share it with facts about FPIES in your community or on social media. 

• Visit Awareness Critters.com to download your kid friendly coloring page. 
• Visit RareDiseaseday.org to download your "Handprints Across America" coloring page.  

#3. Share a medical journal article on FPIES research from our Medical Literature page. 

#4. Change your profile and banner pictures on social media to show your support. 

• Rare Disease Day.US Twibbon profile picture
• Global Genes "Care About Rare" 
• NORD "With Research Possibilities are Limitless" & "Handprints Across America" 
• Awareness Critters 

#5. Challenge family and friends to join in raising awareness and share our “FPIES: Now you Know video”.

#6. Learn and share about the importance of patient registries and their role in  the advancement of understanding of rare disease with our "FPIES At a Crossroads" Global FPIES Day webinar. 

#7. Host an awareness event in your community. Not sure where to start?  

• Print and share awareness materials.  
• Check our out Awareness & Fundraising Events webpage and, 
• Watch our "Creating an FPIES Resource Table for your Awareness Event" webinar. 

#8. Tell Your Story

• Send a letter to the press utilzing the "Sample Press Release Patient Story" template from RareDiseaseDay.us
• Send us your story to be published on our Inspiring Families webpage
• See, watch and read stories and submit your own to Rare Disease Day for publication. 

#9.Share The Mighty's “19 Secrets Families with FPIES Wish Others Knew" 

#10.  Follow us on social media for our daily updates on staying involved!   

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org and www.globalgenes.org.  

This post was written by the FPIES Foundation Board.  

FPIES Foundation joining forces with Rare Diseases Community and Global Genes

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 are not alone in the emergency room desperate for answers, and we will not let you be alone!

Rare Diseases Day 2015 is fast approaching on February 28th and we'd like to highlight the fact that you are not alone, and neither are we.

According to NORD and Global Genes, a disease that affects less than 200,000 people at any given time is defined as rare. FPIES is recognized as a Rare Disease, one of 7000 recognized by the National Institutes of Health. 

A rare disease is a disease that affects less than 200,000 people at any given time. That's 350-million people worldwide who might be battling a different diagnosis, but the fight for advocacy, awareness and research is the same.

That's why we're proud to partner with Global Genes - a leading global rare diseases advocacy organization.

Executive Director Andrea Epstein says when people are starting their rare disease journey it can be daunting.  Collectively, though, she says the Rare Diseases Community can come together so newcomers feel they 'don't have to reinvent the wheel.' Epstein says, "Chances are, tools for other rare diseases may be relevant,” meaning tools for day to day living that are useful for one disorder can help out another.

Global Genes specifically offers Rare Disease Tool Kits - collaborative resources updated in real time with comments and videos, focused on awareness, daily management strategies, and more. The idea is to draw on real life experiences so the next family can immediately benefit.

Took Kits currently available or in the works include:

-How do I become an empowered patient?

-Advocating on Capitol Hill

-Is genetic testing an option?

-Telling your story to raise awareness

Epstein says, "One thing we are very proud of is we create tools that all foundations or individuals can use." She points to Global Genes 'Blue Denim Ribbon Campaign' as a way everyone can raise awareness for Rare Diseases Day.

On the heels of Rare Diseases Day, Global Genes is hosting its first ever Giving Day. 'Give Rare' is March 3rd.  It's a day for the Rare Disease Community to come together in the hopes of raising millions of dollars for their individual causes. Check out the FPIES Foundation's 'GiveRare' page here: http://giverare.razoo.com/story/Fpies-Foundation 

Epstein says, "It feels really good when you know you have helped a family on their journey and made a difference." We couldn't agree more.

This article was written, and interview conducted 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.

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Share How you Care: Rare Diseases Day 2014

From the moment we hold our child for the first time, to catching them when they fall down on the playground, to helping them through food trials and reactions, one of our largest jobs as parents is simply: CARE. 

At the moment our child's medical team meets him or her, we hope to see them learn about our child, foster a relationship with him or her, and work with us to help get our child well as we continue this partnership over time. We look to our children's treatment team to demonstrate that same quality at its core: CARE.

We see it when our older child comforts our young one when he/she can't share a treat, when the playgroup remembers and provides a food-free play space, when rare diseases organizations join together to support patients all over the world in the name of improved quality of life for these patients young and old. 

Care is at the center of our humanity.

This year's Rare Disease Day touches on this theme, one very near and dear to our hearts. Care is the heart of our mission at The FPIES Foundation and care is what truly defines our FPIES community. We have seen family's supporting each other's children without ever even meeting them, sharing recipes/ cooking tips and parenting suggestions, celebrating each other's victories and offering comfort during struggles. 

 We do not have nearly enough space to share all of the acts of care that we witness daily in this incredible community, but to celebrate this Rare Diseases Day, we want to share with our readers a sample of the ways that families affected by FPIES and medical teams supporting them exhibit how they care for someone diagnosed with FPIES:

• "I educate a mom about FPIES every chance I get". ~Jean S.

• "Lots of alternative cooking:-). Almond flour pancakes for lunch today!" ~Erin G.

• "Hug and kiss her little face off!!!" ~Devyn F

• "I look for creative ways to serve his safe foods - it helps him be included at meal times with his brothers." ~Joy M. 

• "Try to teach my two year old girl why can't she eat like everyone else and pray to God that her natural curiosity won't hurt her." ~Heli Z. 

• "I make her days as normal as possible and always remind myself that she is healthy and enjoying life!" ~Katrina P. 

• "I am extended nursing my FPIES baby, my diet is free of her known triggers, I make FPIES friendly meals, research, doctor appointments, ever vigilant about food left out in public, non stop floor sweeping, read ingredients every single time, pack our own meals for family gatherings, outings and vacation. FPIES means no carryout or frozen food even on a busy or sick day. Looking at every sippy cup left out at school, church, park, museum, zoo..... As a danger"  ~Rebecca S. 

• "All the things mentioned above, plus trying to find safe ways to treat my LO when he is sick. He reacts to every medicine we've ever given him, so I try to use those as a last resort." ~Carrie S. 

• "Treating her just like big brother. But she knows what "makes her belly hurt". We've made a point to educate both children. Big brother even tells servers in restaurant "don't give my sister my sister cheese. She has dairy allergies." Love that the whole family is educated enough to watch out for our little girl." ~Jamie H. 

• "Making safe food look like everyones in the family" ~Brandy W. 

• "Loves, hugs and kisses  Also researching formulas and foods in order to keep him healthy when his safe formula runs out."  ~Cyndi M. 

• "Cleaning! Every single crumb on the floor needs to go!"  ~Natasha D. 

• "Every day working towards as much normalcy as is possible, through cooking, educating my small fries and anyone that may encounter them, and finding ways for them to just be kids, despite the craziness that FPIES brings to each day!"  ~Amanda L. 

• "I've learned how to garden and how to cook (beyond just heating something pre-packaged up in the oven!"  ~Victoria R. 

• "Trying many different recipes to find a safe cake or cookie for his first birthday next month...and then finding that he won't eat any of them because of a texture issue! (he gags on anything that is not puréed except cheecha puffs). Sigh. Now going to try more recipes to find a safe pudding that maybe he will enjoy on his birthday!"  ~Abigail M. 

• I get involved with raising Awareness ~Victoria R. 

• "Children and the families of children with rare and unusual medical conditions cry out for help and understanding. All too often those individual cries go unheard- unheard because they are not loud enough to be heard. When these children, their families and their health care providers unite- their unified voice is stronger, that voice and message that it carries is heard and can begin to be understood by others. Strength of purpose comes from joining together, joining talents and strengths to make a real difference." ~Dr.L

Now its your turn--- please tell us how you or someone you love cares for someone diagnosed with FPIES! 

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