Rare Disease Week 2022: Learn How You Can Get Involved

Rare Disease Week 2022 is taking place this year on February 22nd to March 2nd. Though normally held in Washington, DC, the EveryLife Foundation for Rare Diseases, which organizes the event, has opted to go virtual this year in the interest of safety regarding COVID-19. Last year’s event was virtual as well, but don’t think that just because it’s virtual that the week won’t be packed with great things to do.

This event is a special one every year for the rare disease community. It’s a unique opportunity for advocates from around the US to get together. It’s also a time for the community to get informed on federal legislative initiatives that are relevant to those living with rare diseases. You can even have the opportunity to speak with your representatives (and no, you don’t need previous experience). You can check out a brief trailer for the event here.

There will be events taking place every day during Rare Disease Week, such as documentary screenings, an exhibit of art from rare disease patients, and the Rare Disease Day at NIH program on the 28th (you can register for it here). The Legislative Conference days, which run from 1-5 PM on the 23rd and 24th, are highly recommended if you are interested in speaking with members of Congress or their staff.

Want to talk about Rare Disease Week on social media? You can also download a social media toolkit, found here, for the event. Don’t forget to use the hashtag #RareDC2022 and #EveryVoiceMatters.

There are also a few other ongoing activities surrounding the event that you can get involved in. Are you a rare disease patient? You can submit your patient story by March 2 and be entered to win a $1,500 donation to a rare disease nonprofit of your choice. Learn more about this here.

There’s also a social media contest for those who attend Rare Disease Week. Share your experience on your social media platforms and talk about why you’re attending or if the event changed your life. You could win a $100 gift card of your choice! Don’t forget to include the #RareDC2022 hashtag to compete.

There will also be a ‘scavenger hunt’ during the event that you can earn points for just by participating in different activities. You could potentially win up to $5,000 for the rare disease nonprofit of your choice. Click here to learn more.

For patient advocates, registering for Rare Disease Week is entirely free. Click here for the full schedule, registration, meeting materials, and more information.

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