About ACD

Our Story

The Association for Creatine Deficiencies (ACD) was established in 2012, by parents of children diagnosed with Cerebral Creatine Deficiency Syndrome (CCDS) who decided that a unified community was needed to affect change for these rare syndromes. ACD Board Members are unpaid CCDS parent professionals who make financial contributions and are committed to this cause.

Our Mission

To provide patient, family, and public education, to advocate for early intervention through newborn screening, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Our Vision for the Future

Our vision is to have effective treatments and newborn screening for all three CCDS while providing community support. In this future, the rare disease diagnostic odyssey changes from seven years to seven days to treatment, and all CCDS patients achieve their potential.

Symptoms of CCDS mimic other medical conditions, causing patients to often be misdiagnosed. Proper diagnosis and early intervention are critical to establishing treatments needed to improve life quality and longevity for CCDS patients. The ACD was established to raise awareness and education of CCDS among the medical community, to advocate on behalf of families and patients living with Cerebral Creatine Deficiency Syndromes, and to support and fund research initiatives to improve treatments and develop cures for CCDS.