CCDS Awareness Day
Our Hope for a Cure
CCDS Day takes place annually during Rare Disease Month on February 1, bringing us together as a community to raise awareness of Cerebral Creatine Deficiency Syndromes.
CCDS Day ideas for You
- Contact us to create a personalized 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 programs@creatineinfo.org.
- Blog, Tweet, Facebook, and Instagram your CCDS story and pictures of you spreading awareness on CCDS day, using the hashtags #ccds #ccdsday and #acd.
Past CCDS Day Information
CCDS Awareness Day 2026
CCDS Day 2026!
“How our Journey Began”
CCDS Awareness Day 2025
CCDS Day 2025!
“Our Hope for A Cure”
Families participated in ACD’s 2025 CCDS Day campaign, “Our Hopes for a Treatment,” to help raise awareness about the meaningful impact a treatment for CCDS could have on affected families.
Twenty-eight families shared their personal “hopes for a treatment,” which were paired with photos to create social media content shared by both the families and ACD.
CCDS Awareness Day 2024
CCDS Day 2024!
“This is CCDS – Raising Awareness and Supporting Families”
Our goal this year was to spread awareness about CCDS and provide meaningful connections for newly diagnosed CCDS families through our campaign – “This is CCDS – Raising Awareness and Supporting Families”.
We celebrated CCDS Day with a hybrid event in collaboration with Boston Children’s Hospital. Eleven speakers presented on the latest CCDS research. Watch all 11 presentations here.
CCDS Awareness Day 2023
CCDS Day 2023!
“Learn | See | Screen “
Families participated in ACD’s CCDS Day campaign, “Learn | See | Screen,” to emphasize the importance of screening for creatine deficiencies. The campaign encouraged physicians to include creatine deficiency screening in their evaluations and empowered concerned parents to request testing.
As part of CCDS Day 2023, ACD produced a companion educational video translated into eight languages to expand global access to screening information. View the playlist here.
Through coordinated social media outreach, ACD amplified the message and increased awareness about the critical role of early screening.
CCDS Awareness Day 2022
CCDS Day 2022!
“CCDS Research Success Means…“
Families participated in ACD’s 2022 CCDS Day Campaign, “CCDS Research Success Means…” as each family shared their hopes for what CCDS research can change for their affected family member(s).
Families used the hashtag #CCDSDay2022 on their social media accounts, and research success hopes were highlighted on ACD’s social media accounts. CCDS Day continues to raise awareness and serves as an opportunity to unite the three disorders together for a shared cause.
CCDS Awareness Day 2021
CCDS Day 2021!
“Share your CCDS Story”
Families participated in ACD’s CCDS Day Campaign, “Share your CCDS Story” as each family shared their challenges, hopes and the impact of CCDS on their family.
Families used the hashtag #MyCreatineStory on their social media accounts, and family stories were highlighted on ACD’s social media accounts. CCDS Day continues to raise awareness and serves as an opportunity to unite the three disorders together for a shared cause.
CCDS Awareness Day 2020
CCDS Day 2020!
Over 15 families participated in ACD’s CCDS Day Campaign, as each family shared what CCDS research means to them. CCDS Day continues to raise awareness and serves as an opportunity to unite the three disorders together for a shared cause.