Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year – February 28 in 2022. The ACDA has signed on once again to partner with NORD to support this awareness campaign and we encourage everyone to participate in some way.
Below are a few suggested ideas:
- If you are a parent of a child affected by ACDMPV, please join us for a Coffee Hour on February 27, 2022 to meet and interact with other ACDA registered parents. The Zoom details will be provided separately in a closed group for parents and the exact time will be announced shortly (expected to be around 1:00 p.m. Eastern time zone).
- Join the ACDA on social media by using the ACDA profile frame (access HERE) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2022, #ACD, #ACDMPV
- Fill your home with color! In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colors at 7:00 p.m. your local time on February 28, 2022. See the flyer below for additional details!
- Organize a fundraiser (Facebook or direct give) to raise money for the next ACDMPV research grant.
- Contact your local newspaper to write an article about what Rare Disease Day means to you. Click HERE to read various articles previously written about our ACDA families.
Click to see how the ACDA supported Rare Disease Day in 2021 (also 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2022 and click HERE to visit the EURORDIS website for Rare Disease Day 2022 in Europe.