Rare Disease Day: February 28, 2022

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2022!

Check out our ACDA families and friends wearing #JeansforGenes and the ACDA logo (be sure to visit the ACDA store if you would like to purchase any gear), along with NORD’s #LightUpForRare campaign!

Below are flyers used by our ACDA families at their workplace that encouraged employees to donate $5 / £5 / €5 to the ACDA to wear jeans to work for Rare Disease Day 2022. #JeansForGenes

Please share your successful Rare Disease campaigns and activities with the ACDA by sending your stories or pictures to president@acdassociation.org. We look forward to hearing from you!

Update (March 1, 2022): Now that #RareDiseaseDay2022 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the overwhelming support, including generous donations yesterday in honor of Merrideth, Barrett, Chelsea, Fallon, Amelia, Halima, Caleb C., Annabelle, David A., Poppy, Johnny R., Garrett P., Baby James and Callie. These honorary donations represent fourteen of our precious ACDA children. It was truly a fantastic day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2022! The funds will be contributed to ACDMPV research grants and supports the efforts of the medical community to find the cause of and cure for ACDMPV. If you would still like to contribute, please visit our website here at any time – https://acdassociation.org/donate/

Searching for answers…hoping for a cure.

Update (February 28, 2022, 6:00 a.m. EST):  It’s here! Today we are coming together to recognize #RareDiseaseDay2022! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters!

Today and tomorrow are also great days to wear your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Please post a picture in the comments below! Please also share your light show for NORD’s #LightUpForRare! We will compile all the pictures into a slideshow for our website.

We will be showcasing donations made today in tribute of a loved one with a special “Rare Disease Day 2022” recognition image featuring the child’s name. The ACDA will also send a letter to the honoree’s family acknowledging your gift. When you give in honor or in memory of someone special, you also support our mission of finding the cause of and cure for ACD. Please go here to make your donation today: https://acdassociation.org/donate

If you donate through the Facebook button, please be sure to let us know in the comments below or through an email to treasurer@acdassociation.org as we do not receive a list of individual donors through Facebook. We want to be sure to recognize your honorary donation!

Numerous organizations and schools around the world are participating in our #JeansForGenes campaign to wear jeans to work or school with a donation. Other ways to participate include visiting our ACDA store (linked below!) to buy ACDA apparel or simply inviting your friends and family to “Like” our Facebook page.

We look forward to a meaningful day in honor of all the babies and children gone too soon or affected by ACD. Thank you for your continued support of our very important mission! #RareDiseaseDay, #ShowYourRare, #LightUpForRare, #WRDD22, #ACD, #ACDMPV

The ACDA is a 501(c)(3) non-profit, tax-exempt organization as designated by the Internal Revenue Code of the United States. If you would like to help fund research into ACD, please donate here: https://acdassociation.org/donate/

If you live in the UK or elsewhere in Europe, you can also make a donation directly to our sister organization, The David Ashwell Foundation HERE.

ACDA store: https://shop.spreadshirt.com/ACDAssociation
ACDA Facebook: http://www.facebook.com/ACD.Association
ACDA Instagram: https://www.instagram.com/alveolar_capillary_dysplasia/
ACDA Twitter: http://twitter.com/acdassociation
ACDA website: https://acdassociation.org/

Update (February 27, 2022): It’s coming!! Monday (February 28) is Rare Disease Day and one of the most important ACDA fundraisers for our annual research grants. Wear your jeans to work on Feb. 28 and/or your ACDA T-shirts, sweatshirts or other apparel featuring the ACDA logo. Also consider joining NORD’s #LightUpForRareCampaign (details below!). Please send us a picture for the slideshow on our website beginning tomorrow!

Update (February 21 2022): Only one week until Rare Disease Day! Please visit our website to learn about different ways you can participate in Rare Disease Day for the ACDA, including flyers to print for our $5 “Wear Jeans to Work” day on February 28 and information about NORD’s #LightUpForRare! It’s not too late for the ACDA to create a special “Wear Jeans to Work” day flyer personalized with your child’s name if you would like to organize the event at your workplace. Please send a message, leave a comment or email (president@acdassociation.org) if you would like to request a customized flyer for distribution. Rare Disease Day is one of the ACDA’s biggest fundraisers during the year and we need your help to continue funding annual ACD research grants! THANK YOU!

Original Post (February 1, 2022):

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 Sunday, February 27, 2022 at 1:00 p.m. EST (6:00 GMT (UK)) to meet and interact with other ACDA registered parents. The Zoom details will be provided separately via email and in a closed group for parents.
  • [Edited to add: It appears most Facebook frames are no longer permitted, please see the FB announcement. Apologies for the inconvenience]. Join the ACDA on social media by using the official ACDA Facebook profile frame above (access HERE) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2022#ACD, #ACDMPV

  • Click HERE ($), HERE (£) or HERE (€) to print a flyer for anyone to use at their workplace that encourages employees to donate $5 / £5 / €5 to the ACDA and wear jeans to work on Monday, February 28 for Rare Disease Day! #JeansForGenes

  • 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.

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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.