Past Events

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 […]

Holiday Heroes 2022

Holiday Heroes 2022 is here! Learn more about this year's campaign goals and how you can participate here.

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.

CCDS Sibshops

Calling all CCDS siblings! We're excited to announce that ACD is partnering with Sibshops to provide a space for siblings to connect and receive peer support in a fun environment. Sign up today! https://creatineinfo.org/sibshops/  UPCOMING SESSIONS Saturday, January 14th Saturday, February 25th Saturday, April 8th Each date will have three times: 2:00-2:45 ET youngest group […]

CCDS Day 2023

Learn how you can participate in the #CCDSDay2023 campaign here.