Rare Disease Day: February 28, 2023

  Posted on by acdassociation

Update (March 1, 2023): Now that #RareDiseaseDay2023 has drawn to a close, we would like to give our sincerest thanks to our ACDA community for the support, including generous donations yesterday in honor of Fallon, Amelia, Ronan B., Phoebe, Barrett, Annabelle, Dean, Chelsea and Baby James. These honorary donations represent nine of our precious ACDA children. We are thankful for a day of awareness and giving.

Stay tuned for updates in the coming days on the total amount raised in connection with #RareDiseaseDay 2023! 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, 2023, 6:00 a.m. EST):  It’s here! Today we are coming together to recognize #RareDiseaseDay2023! In addition to spreading awareness about ACDMPV, today also marks a critical ACDA fundraiser for our annual research grants and your support matters!

Today is also a great day 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 2023” 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, #WRDD23, #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, 2023): It’s coming!! Tuesday (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, 2023): 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, 2023):

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 2023. The ACDA has signed on once again to support this awareness campaign and we encourage everyone to participate in some way.

Below are a few suggested ideas:

  • 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 Tuesday, 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, 2023. 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.
  • Join the ACDA on social media by using the official ACDA frame above (you can download the transparent .PNG file HERE and overlay onto your favorite photo in your preferred photo app if you are tech savvy – or try overlaying your photos with a free online version at https://overlay.imageonline.co – you also may need to do it on a computer rather than mobile and crop after) to share that you love someone rare! Also use the hashtags #LightUpForRare #RareDiseaseDay, #ShowYourRare, #WRDD2023, #ACD, #ACDMPV

Click to see how the ACDA supported Rare Disease Day in 2022 (also 2021, 2020, 2019, 2018, 2017 and 2016)! Click HERE for ways to participate in the U.S. in 2023 and click HERE to visit the EURORDIS website for Rare Disease Day 2023 in Europe.

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