WHAT IS RARE DISEASE DAY?
Rare Disease Day is a day to raise awareness of the over 10,000 rare diseases that impact over 300 million people globally! Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose. The National Organization for Rare Disorders (NORD) is the official US partner for Rare Disease Day working alongside sister organization EURORDIS (Rare Diseases – Europe) and 65+ national alliance patient organization partners all over the world. The E.WE Foundation is a proud national and international partner, friend, and supporter of Rare Disease Day!
Rare Disease Day is observed every year on February 28th (or 29th in leap years)—the rarest day of the year.
Why is Rare Disease Day Important?
For Rare Disease Day 2022 Sarita sat down with Sarah Tompkins, patient advocate and Ms. Wheelchair Washington USA 2022 for an exclusive Rare Disease Day conversation! Listen as Sarah shares why rare disease day is important to the rare community!
WAYS TO GET INVOLVED
TUNE IN TO THE BEING RARE PODCAST
Join us for a Being Rare Podcast Rare Disease Day Exclusive – Being Rare & Black – A Raw Conversation about Race, Health, and Stigma. Watch the live recording at Being Rare Podcast *Live or listen on our traditional Being Rare Podcast!
SHOW YOUR STRIPES®
The zebra is the official symbol of rare diseases in the United States. In honor of our shared mascot, wear striped clothing and accessories to show our support for the lives impacted by a rare disease. Wearing stripes can start a conversation that helps others learn the facts about the prevalence and challenges of rare diseases. Take a picture of your striped look and share it on social media with the hashtags #EveryoneIsWe #ShowYourStripes and #RareDiseaseDay and let’s make some noise for our herd!
RARE DISEASE WEEK ON CAPITOL HILL
Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year! Hosted by Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, the multi-day event brings together rare disease advocates from across the country to make their voices heard by their members of Congress. Learn more at rareadvocates.org/rdw.
Rare Disease Day. www.rarediseaseday.org | National Organization for Rare Diseases. www.rarediseaseday.us