Past Events


February 1st is #CCDSDay2022 and we want to share your story with the world. Send us a picture of your family and complete the following quote: “CCDS research success means…” Complete your submission here and we’ll raise our voices in 2022 to let researchers around the world know that our community is strong and ready to […]

2/4 PaReNts Webinar

Register for the webinar here. To learn more about the PaReNts project, visit our informational webpage.

2/11 PaReNts Webinar

Register for the webinar here. To learn more about the PaReNts project, visit our informational webpage.

Symposium: “What to Expect” Webinar

“What to Expect at the Symposium” Zoom gathering! June 17th, 10:00 AM or 3:30 PM MDT. We’ll be sharing all the details of the symposium and Utah tips to help you feel prepared for the big event. Register today! The webinar recording will be made available for those unable to attend.

2022 CCDS Scientific + Patient Symposium

This conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient and family community. Professionals will learn from families and patients while also presenting their experience and knowledge of GAMT, CTD, and AGAT disorders, allowing for a deeper understanding of CCDS in the medical […]

Walk for Strength 2022

Join us on Saturday, August 20th, 2022 for the ACD's 7th annual Walk for Strength! Visit our Walk for Strength 2022 page to learn more, set up your team and register!

Virtual Town Hall with Ultragenyx: Updates on the Vigilan Study

Do you have questions about the recent changes announced by Ultragenyx to the Vigilan Natural History Study? ACD is hosting a virtual town hall event on Friday, Oct. 14, from 12 noon – 1:30pm PT with Ultragenyx representatives and Dr. Judi Miller, the Coordinating Principal Investigator for the Vigilan study, to answer your questions. You […]

EL-PFDD Introductory Webinar

Join us on Dec 8, 2022 at 2:30 PM ET for an introductory webinar aimed at providing an overview of EL-PFDD meetings, including more about the format, purpose, and goals of the January 2023 CCDS EL-PFDD. Learn more and register here.