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.  

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

Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.

A rare disease is defined as “rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. ” (Rare Disease Day)  

As we honor this day, we encourage you to create a conversation about rare diseases:

• Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
• Share your story with your local news and on our Inspiring Families page. 
•           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
• Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 

• Join hands
  

• Create a social media profile picture frame  and share it with us for our social media album

• Tell your story on Rare Disease Day and Global Genes  to be published.  

Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or RareDiseaseday.org pages to get informed and download their RDD materials.

This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation. 

A Rare Disease Day Challenge for FPIES

This year, in honor of Rare Disease Day, a family in the FPIES community hosted an awareness event for FPIES.  We, at the Foundation, found the event very encouraging and asked them to share their story...

Chase's FPIES Challenge started out as a way for me to help my friends and family understand what living with FPIES is all about.   Chase is 3 and by now they have all heard about Chase's 'crazy food allergies,' and some of them even know the lingo, asking about passes, fails, challenges and triggers.  A few may even know what FPIES stands for.  But hearing about it and living it are two very different things.

I challenged them to cook just one meal in the month of February (leading up to Rare Disease Day) that would be safe for Chase to eat.   Chase currently has about 25 safe foods.  I provided clear instructions, and an ingredient list.  I indicated where an ingredient was brand specific or needed to be organic.  I made sure they knew that 'processed in a facility where soy is processed' was a no-go and then I wished them good luck.

Then the questions started coming in.   Can I use pepper?  No.  Can I use spices?  Sea salt only.   Can I use chicken broth.  No!

Then the recipes started coming in.  I was blown away.   My fellow FPIES and food allergy families got it right away.   It warmed my heart that they tried to prepare meals that would be safe for our kids to eat together.  If we could magically erase the miles between us I'm sure we would have!   I was amazed by the culinary skills I never knew some people had and inspired to try some of these creations in my own kitchen.   It brought tears to my eyes when one friend had her 7-year old daughter help her make a kid-inspired safe meal, complete with a handmade menu.

Then one friend really hit home with me, a friend I haven't seen in 13 years! She told me her first attempt at apple blueberry muffins was a disaster.  She admitted she was about to just give up and skip the challenge.  Then she thought of us and thought of Chase and realized that's a luxury we don't have.  She tried again and made some amazing looking muffins.

I can't order pizza because I had a long day at work or rely on a frozen lasagna because I didn't have time to go grocery shopping.   FPIES is our life, at least for the foreseeable future.   We embrace it,  we manage it. We put on a happy face and positive attitude and thank God every day for two healthy boys and the progress Chase continues to make.   But at the end of the day it is exhausting both mentally and physically and there is no room for error.

I truly want to thank everyone who took Chase's FPIES Challenge or even those who just followed along.  FPIES can be isolating but I believe the burden is on those of us living with it to raise awareness.   Truly,  we are not alone!

This article was 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.

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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Rare Diseases Day 2015: Living with a Rare Diagnosis

Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives”. (What is a Rare Disease)

The theme for Rare Disease Day 2015 is, “Living with a rare disease: Day-by-day, hand-in-hand”.  In honor of this, we asked the community to give one word to describe what living with FPIES means.  We received numerous impactful responses, demonstrating our strong solidarity as a community.

How can you get involved? 

1. Download and share Rare Disease Day communication materials! Share your awareness of Rare Disease Day with your online community, utilizing logo’s, banners, badges, and social media profile pictures.

• Global Genes – Global Genes has “I love someone RARE” profile pictures again this year; you can upload your child’s photo for this unique profile picture, or simply use one of their other profile pictures and banners for your social media profile.  Also be sure to share your pictures with us and Global Genes on social media!
• Rare Disease Day -  Rare Disease Day has the official logo and countdown ticker to add to your blog or website as well as posters and banners to show your support of this day.
• The FPIES Foundation – visit our website and Facebook Rare Disease Day Event page to click and share banners, logos, and profile pictures created just for Rare Disease Day awareness of FPIES.

2. Share FPIES awareness materials in your online community – visit our website and Facebook album to share these flyers online. 

3. Share your family story of what living with FPIES means to you. Sharing your story shares awareness, and awareness is key!

• Read and share Inspiring Family Stories.
• Write to us at contact@thefpiesfoundation.org on how to get your story published on our Inspiring Families pages.
• Provide an update to a story we have already published!

4. Distribute Awareness Materials in your local community – at the doctor’s office, at daycare or school, at your playgroup. Download, print and share these flyers in your community: 

5. Start the Conversation!  An awareness conversation does not have to be formal or lengthy. Some great settings include but are not limited to moms’ groups, breastfeeding support groups, new parent education groups, staff meetings (at schools,nutrition clinics, etc). Pick a setting that is meaningful to you and then make a call!

6. Participate in or host an awareness event in your community!

• Support group meeting- get together and share what it is like to share a rare diagnosis. “You are not alone”. 
• Fundraiser event – host a walk, host an FPIES awareness event, initiate a wear jeans at work day fundraiser, or participate in ongoing online fundraisers. 
• Participate in Give Rare Day March 3^rd, a Global Genes Initiative that benefits non-profits.

7. Wear your awareness materials!

• Café Press Foundation gear - “Rare But Real” t-shirts, with thanks for the original design by Crystal Martin, these t-shirts are now available through the Foundation Café Press store.  
• Be Brave Bravelets - Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from the Foundation’s page. With every Bravelets purchase from our page, $10 will be donated to The FPIES Foundation, to advance our cause for education, advocacy, outreach and research.
• Global Genes Ribbon - The Blue Denim Genes Ribbon logo, from Global Genes, has become an internationally recognized awareness symbol for rare and genetic diseases.

8. Rare Disease Week on Capital Hill - participate in your community's legislative events

• NORD encourages individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. - See more at: Rare Diseases Day State House Events 
• Rare Disease Day on Capital Hill with Global Genes

9. Check out Global Genes & Rare Disease Day websites for additional resources!

• Global Genes
• Rare Disease Day 
  

10. Follow our Website News and Events and Social Media for Foundation Activities honoring RDD

• Follow us on Facebook and share awareness materials 
• Follow on Twitter, #Living with FPIES #WRDD15 #Careaboutrare 
• Join our online events for RDD 

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