WHAT IS RARE DISEASE DAY?
Rare Disease Day is a day to raise awareness of the over 7,000 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 partner, friend, and supporter of Rare Disease Day! Take a look at our official partnership page!
Rare Disease Day is observed every year on February 28th (or 29th in leap years)—the rarest day of the year.
WAYS TO GET INVOLVED
BEING RARE PODCAST
Being Rare Podcast is excited to welcome Sarah Tompkins, patient advocate and Ms. Wheelchair Washington USA 2022! Join us on Rare Disease Day as we discuss advocacy, pageantry, and life as a rare disease patient.
Listen on Monday, February 28th!
SHOW YOUR STRIPES®
The zebra has become the official symbol of rare diseases in the United States. In honor of our shared mascot we wear striped clothing and accessories to show our support of those impacted by a rare disease. Take a picture of your stripes on February 28th and share it on social media with the hashtags #EveryoneIsWe, #ShowYourStripes and #RareDiseaseDay!
RARE & RELATABLE
RARE & RELATABLE is a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. To chat with some of the most important people in rare disease, join the Disorder Channel and Once Upon A Gene Podcast on 2/28 at 12pm EST for Rare and Relatable: RDD Chats and Hacks on Discord!
Join us on Discord* on February 28 at 12pm EST.
RARE DISEASE WEEK ON CAPITOL HILL 2022
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Hosted by Rare Disease Legislative Advocates, a division of the Everylife Foundation, Rare Disease Week on Capitol Hill 2022 will take place virtually from February 22-March 2. Join us for a week that can change your life! To learn more visit rareadvocates.org/rdw.
9th Annual Rare Disease Genomics Symposium
The University of Alabama at Birmingham, Children’s of Alabama, Alabama Rare and the Alabama Genomic Initiative will host the 9th Annual Rare Disease Genomics Symposium via Zoom on Friday, March 4 from 12 to 4:30 p.m. This year’s symposium will focus on science and research related to telehealth and therapeutic advances. The symposium is free.
Rare Disease Day. www.rarediseaseday.org | Being Rare Podcast. http://anchorfm/beingrare | National Organization for Rare Diseases. www.rarediseases.org | Rare & Relatable on Discord. https://discord.gg/WEkNqJ9VYM | Everylife Foundation. www.everylifefoundation.org