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 

Global FPIES Day Impact!

From the moment The FPIES Foundation announced the day in August to the official proclamation released on Global FPIES Day itself, the FPIES community has been making a great impact for the first Global FPIES Day! Immediately, our community set out to raise awareness in families' hometowns and host fundraisers, assisting the Foundation in building awareness and support to empower families and the medical community on this special day and all year round!

Global Day was established by The Foundation as a day specifically set aside for FPIES, a day to hone in on specific awareness, education and outreach objectives. An “FPIES: Be The Voice” awareness ribbon was developed for The Foundation and Global Day by an FPIES family. The unified colors of teal and orange hold great significance. Teal represents Food Allergy Awareness and Orange signifies strength and advocacy, mirrored in the Foundation logo.

On the days leading up to Global Day, the sharing of the "Be the Voice" Ribbon Frames was astounding! In all, this Facebook album reflects the faces of 220+kids (and advocates supporting them!) from around the globe! Additionally, over the week our social media pages increased in followers, and our FB posts reached over 21,000 viewers!

Awareness was built through your “Share Your 14”efforts in your community, by sharing what Global Day means to your family, and by creating the “Be the Voice” Ribbon frames! Fundraisers raised awareness and funds from events such as: T-fund Global T-shirt sales, Jamberry Nails, Etsy shops, and HP Threads custom designs. Jersey Mikes in James City, North Carolina, set the tone for establishing local awareness! The Cafe Press-FPIES Foundation storefront and Bravelet sales demonstrated the FPIES community's commitment to spreading awareness, fashionably!

We were thrilled to see kids getting in the action! There was Vivian and her custom glitter tattoo (made to her request!), and the magnitude of photo shares of kids raising awareness in Global day t-shirts. We “met” siblings creating unique Global Day flags, and were so moved by the actions of countless others! It is so powerful to see such a community of budding advocates! Great work, kids!

Our partners at Sarah's FPIES Clubhouse hosted events all month long, leading up to the big day! From naming the Awareness Heroes (be sure to stop by The Clubhouse and meet Super Sally and Flying Freddy!), to mazes and coloring events created just for the day, the Clubhouse was the place to be for kids in action!

We were excited to see several families sharing their stories in news stories, as well as online and print publications:

·         "I want you to Know about Why My Son Can't Eat", published on the Leaky Boob.com.
·       "Local Couple Seeks to Raise Awareness on Invisible Allergy" published on the Beaumont New
·       Cohen's Story, appearing on WOAY Newswatch

The work doesn't stop here! The Foundation has been following the guidelines set out to establish the day as an officially recognized National Health Observance Day. Please continue to follow our website's “News & Events” and social media postings, as we work with Advocacy representatives assisting this community in achieving this goal. There are always ways for all families and communities to pitch in-- keep posted  to learn how you can help throughout this process and beyond!

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