Community Events

CCDS Awareness Day

Wednesday, February 1, 2017

It’s official! February 1st is “Cerebral Creatine Deficiency Syndrome Awareness Day.”
Help spread awareness of CCDS by celebrating this day in your community.

Some ideas include:

  • Create a personalized campaign on our Crowdrise Page (Scroll down to the orange button “Create a Fundraiser”, enter your CCDS story and pictures, post on Facebook and it links back to support ACD’s campaign!)
  • Speak at your child’s school about CCDS.
  • Wear CCDS apparel available at the ACD Shop.
  • Distribute awareness brochures and share your story with pediatricians, developmental pediatricians, pediatric neurologists, and geneticists in your area. For brochures and other materials to share on CCDS Awareness day, please email
  • Blog, Tweet, Facebook, and Instagram your CCDS story and pictures of you spreading awareness on CCDS day, using the hashtags #ccds #ccdsday and #acd.

ACHDNC Quarterly Meeting

Thursday, February 9, 2017

The Advisory Committee on Heritable Disorders in Newborns and Children will be having this quarterly meeting via webinar. If you would like to make your voice heard regarding the inclusion of GAMT on newborn screenings nationwide, you may register to make public comments at the ACHDNC website. Registration opens approximately two weeks before the meeting.

Rare Disease Day

Tuesday, February 28, 2017

CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day.
Help us join with other rare disease groups in spreading CCDS Awareness on February 28, 2017.

Rare Disease Day is a worldwide initiative. For more information on this international event, visit

For more information about Rare Disease Day in the US, click here.

Shop and support ACD to get your CCDS Awareness merchandise today!

Nord and ACD logos for rare disease day

ACD’s partnership page can be found here.

For ideas of how to participate in rare disease day and both support this initiative and raise awareness of Cerebral Creatine Deficiency Syndromes, Click Here.

Rare Disease Day CCDS Feature:

Texas Children’s Hospital National featured this CCDS story for Rare Disease Awareness Week: “My Son’s Story”