Association for Creatine Deficiencies

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About

The Association for Creatine Deficiencies in Carlsbad's La Costa corridor serves as the international advocacy and research hub for three rare cerebral creatine deficiency syndromes—CTD, GAMT, and AGAT—from its El Camino Real headquarters near the Omni La Costa Resort. Founded in 2012 by parents of diagnosed children, the 501(c)(3) under EIN 46-2133007 led a seven-year campaign that secured GAMT Deficiency's addition to the federal Recommended Uniform Screening Panel in 2023, a milestone in rare-disease advocacy that places it among Carlsbad-based biomedical research nonprofits alongside n-Lorem Foundation. The ACD Fellowship research program, launched in 2021, funds young investigators and supports the Creatine Deficiency Research Center at the University of Utah. A patient registry and Global Ambassador network drive newborn screening adoption now active in eight U.S. states, with 21 additional states and territories approved, building a research-to-treatment pipeline supported by North County's biotech workforce programs at MiraCosta College Technology Career Institute. Ongoing initiatives include drug-repurposing trials and functional near-infrared spectroscopy studies in partnership with Boston Children's Hospital to monitor disease progression in CCDS patients.