Rare Disease Day: February 28, 2021

Please see below for ways that our ACDA families and friends supported Rare Disease Day in 2021!

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)!

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, 2021): Now that #RareDiseaseDay 2021 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 Callie, Annabelle, Fallon, Johnny, Chelsea, Zeke, Amelia and Barrett. These honorary donations represent eight 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 2021! 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.

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 2021. 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. Click to see how the ACDA supported Rare Disease Day in 2020 (also 2019, 2018, 2017 and 2016)!

Click HERE for ways to participate in the U.S. in 2021 and click HERE to visit the EURORDIS website for Rare Disease Day 2021 in Europe.

Below are a few suggested ideas:

Facebook Profile Frame (access HERE)

  • Join the ACDA on social media by using the new ACDA profile frame (access HERE) to share that you love someone rare! Also use the hashtags #RareDiseaseDay, #ShowYourRare, #WRDD2021#ACD, #ACDMPV
  • We are pleased to announce the NYPD in New York City, USA is hosting its annual Rare Disease Day Awareness Event on February 28, 2021 at 1:00-2:30 pm EST. Please see the Zoom information below, all are invited to attend and we would love to see you there. Here’s the details:
    • Maria Catalano, ACDA mother to James Perrella, has facilitated the event with the ACDA and will be a featured guest speaker. The ACDA has also prepared a brief slideshow presentation for inclusion in the program and is honored a video prepared by Dr. Pawel Stankiewicz for this event will be included to provide his world renowned expertise on the topic, “Current state and summary of developments regarding ACDMPV genetic research.” The event will also feature representatives from NORD, medical professionals from area hospitals, organ transplant specialists, law enforcement and other families touched by RDD. Bob Rilling, ACDA father to Fallon Rilling, will also be in attendance in support of the ACDA and the Perrella family.
    • Zoom Information:
      Date: Sunday, February 28, 2021
      Time: 1:00 PM-2:30 EST
      Join Zoom Meeting
      Meeting ID: 161 828 1868
      Passcode: WEARERARE2021
  • 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.