Held the last day of February each year, World Rare Disease Day is an annual observance to raise awareness for 400 million people affected by rare disease globally. World Rare Disease Day 2022 is February 28th, 2022.

Here’s what can you do to help elevate the cause and shine a light on rare disease patients and caregivers around the world:

 

Add or Join a Rare Disease Event

Whether you’re organizing a local awareness event, a community fundraiser or a large-scale conference, you can add the event to the map in our new online Events Hub. To create an event, log in and create a RARE Portal profile. Looking for World Rare Disease Day events near you? Search the events in the Global Genes Events Hub.

 

Wear That You Care

What better way to show that you #CareAboutRARE than with one of these limited edition Fenrici masks? Order yours here today and share your support for rare disease all year round.

Post Why You Care About Rare

Download and print our Care About Rare sign to show your support for the rare disease community! Fill in your sign after printing, take a picture/selfie with the sign, and post your completed sign on social media. Tag us @Global Genes, and use the hashtags #RareDiseaseDay and #CareAboutRARE, for a chance to be highlighted on our social media channels.

 

Interact With Us on Social Media

Show us how you are celebrating and honoring World Rare Disease Day on social media. Tag us @GlobalGenes and make sure to use the hashtags #RareDiseaseDay and#CareAboutRARE, for a chance to be highlighted on our social media channels. Follow us on Instagram, Facebook, LinkedIn and Twitter to stay up-to-date.

Join us as we #RedefineRARE

Let’s share what RARE means to us – who we are, how we live, laugh, love, cope, and care – and how we’re redefining the RARE experience!

  • Film a short video sharing how you #RedefineRARE. Is it by keeping the patient voice at the center of your work? By redesigning clinical trials? By raising awareness, and that rare disease is actually more common than you think?
  • Download, print, and post why you #CareAboutRare on social media (tag @GlobalGenes and use #RareDiseaseDay and #CareAboutRARE) to show your support for the rare disease community!

Participate in our #ShowYourGenes Challenge

We’re having a little fun on social media with a #ShowYourGenes challenge. We want to flood social media with as much denim as possible to help raise awareness for the families impacted by rare diseases. Here’s how to participate…

  1. Put on as much denim as you can, perform a simple dance, do a transition or time-lapse, tell us why you #CareAboutRare or come up with your creative denim idea!
  2. Post on social media – TikTokTwitterInstagramFacebook – and use the hashtags #ShowYourGenes #RareDiseaseDay #RedefineRARE #CareAboutRare and tag @GlobalGenes.
  3. Challenge 3 (or more) friends or organizations to participate, or donate $10 for the 1 in 10 affected by rare disease to support the Global Genes Rare Impact Fund which supports families and organizations battling rare diseases. Text “RARE” to 41444

Catch Global Genes Out and About

We’re happy to be speaking at and participating in many of our partner’s Rare Disease Day initiatives. Whether it’s presenting at an industry partner lunch & learn, running virtual or in-person 5 and 7k’s, or sharing patient stories and resources at our partner’s events – the team is busy helping support.

Let Us Know How We Can Support You!

We want to help get the word out about the amazing work you’re doing (around Rare Disease Day…and EVERY day). Tag @GlobalGenes on social media and we’ll help spread the word!