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.