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…
- 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!
- Post on social media – TikTok, Twitter, Instagram, Facebook – and use the hashtags #ShowYourGenes #RareDiseaseDay #RedefineRARE #CareAboutRare and tag @GlobalGenes.
- 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.
- NIH Rare Disease Day twitter chat on February 24 from 2-3pm ET
- Gene Therapy for Rare Disorders conference in Boston on March 7
- Outsourcing-Pharma virtual Q&A, February 23, 11am ET with our CEO Craig Martin
- Join our very own Parvathy Krishnan and Daniel DeFabio for a Rare Disease Day chat on February 28th, 12pm ET. Hosted by The Disorder Channel and Once Upon A Gene podcast on Discord with some of the most important people in rare disease
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!