top of page

The Association for Creatine Deficiencies

The Association for Creatine Deficiencies (ACD) is a growing parent-led advocacy organization that provides patient, family, and public education to advocate for early diagnosis of cerebral creatine deficiency syndromes (CCDS) and to advance research for much-needed treatments and cures.

ACD was established in 2012 by parents of children diagnosed with a CCDS who decided these rare diseases need a unified community to affect change for the future. CCDS are inborn errors of metabolism, which interrupt the formation or transportation of creatine. Creatine helps supply energy to all cells in the body. Symptoms may include intellectual delays, gross motor delays, expressive speech and language delay, autistic-like behavior, hyperactivity, seizures, projectile vomiting in infancy, and failure to thrive. ACD is dedicated to the three CCDS:

ACD leaders know they can’t afford to be bystanders in the research process waiting on developments from the medical field. As such, the organization is committed to being an active player in research and fostering a symbiotic collaboration where researchers and parents work together. With three rare diseases under one umbrella, the ACD is leveraging the power of a stronger, united community to drive research. For more information, visit


Disclaimer: The information contained in this page is provided by the partnering patient organization for informational purposes only.  The 40 Percent Inc. does not warrant its completeness or accuracy, and it should not be construed as an endorsement by The 40 Percent Inc. or relied upon as a basis for your support for the partnering patient organization.  The information is subject to change without notice.

bottom of page