This Friday is Rare Disease Day, a chance to raise awareness for rare diseases as a global health challenge and foster support for those living with them. Instead of directing efforts toward one particular disease, the day is for the rare disease community to join as a whole.
Rare Disease Day is a powerful reminder that we are not alone. This year’s theme certainly resonates with our FPIES community: “Join together for better care!”
IAFFPE is proud to be a Rare Disease Day partner. We’re also honored to be the only FPIES patient organization affiliated with NORD (National Organization for Rare Disorders). Click here for NORD’s report on FPIES in the Rare Disease Database.
With the big day just around the corner, here are five simple things we can all do to come together and bring attention to rare diseases like FPIES.
1. Share That You Care
Rare Disease Day is the perfect day to wear your FPIES awareness ribbon or wristband. Snap a photo in/with it and post to your Facebook page or use it as your profile picture for the day on February 28th. Or simply download the Rare Disease Day logo here to display as your profile photo.
2. Handprints Across America
3. Share Your Story
Get the Rare Disease Day US press kit and learn how to share your story with local media. This tool makes it easy to share the meaning and message of the day and gives tips on how best to share your particular story. Sharing experiences helps others understand what it’s like to live with a rare disease.
4. Say Thank You and Raise Awareness in Your Networks
Living with a rare disease can be a long, lonely journey. Rare Disease Day is an important opportunity to thank those who help us along the way—family members, friends, physicians, teachers. It’s also a chance to raise awareness in our social networks by sharing news stories and educational videos that put a spotlight on FPIES.
5. Other Suggested Activities
NORD has compiled a list of simple actions you can take today, from participating in a statehouse event to in-school activity ideas.
Rare Disease Day harnesses the energy of those around the world with rare diseases — and the millions who care for and support them — to raise awareness and generate action. You can contribute to the collective cause by doing any of these things. And don’t forget to follow us on Facebook and Twitter, as IAFFPE honors Rare Disease Day!