Patient Resources

Patient Resources

  1. Brochures

    Guide to Understanding CCDS Brochure

    AGAT, GAMT, and CTD symptom and diagnosis information designed for caregivers, diagnosing physicians, and others seeking a better understanding of Cerebral Creatine Deficiency Syndromes.


    Ein Leitfaden zum Verständnis von CCDS Zerebralen Kreatinmangelsyndromen

    German Guide to Understanding CCDS Brochure


    Handleiding en uitleg van CCDS Cerebrale Creatine Deficiëntie Syndromen


    Outreach Brochure

    Overview brochure of the mission of ACD. Great for fundraising and building awareness.

    *For hard copies of our brochures, email info@creatineinfo.org.

  2. Clinical Trial Education
  3. Creatine Decoded

    Drug Repurposing Fellowships

    This essay was written by Erin Coller, ACD Director of Communications, with support from Laura Trutoiu, ACD Director of Research, and Sangeetha Iyer, ACD Scientific Advisor.


    CCDS Gene Therapy Research

    This essay was written by Laura Trutoiu, ACD Director of Research, with support from Erin Coller, ACD Director of Communications, and Sangeetha Iyer, ACD Scientific Advisor.


    Featured Scientist, Dr. Jonathan Schlebach PhD

    This essay was written by Celeste Graham, ACD Director of Education, with the support of Sangeetha Iyer, ACD Scientific Advisor.


    Behavior Support and the First ACD Webinar for Parents

    This essay was written by Celeste Graham, ACD Director of Education with support from Laura Trutoiu, ACD Director of Research and Heidi Wallis, ACD President.


    Pharmacochaperoning & CTD Research Participation

    This essay was written by Erin Coller with the support of Laura Trutoiu, Director of Research, and Sangeetha Iyer, ACD Scientific Advisor.

  4. CreatineInfo Patient Registry
  5. Supplement Resources

    JoMar Labs Amino Acid Discount

    JoMar Labs offers a discount to CCDS families for supplements including creatine and l-ornithine-HCL. To set up an account and verify that you are an “ACD family” with a child with a CCDS, call JoMar at 1-800-538-4545.


    Creapure Creatine

    Information on Creapure Creatine Monohydrate is provided by the manufacturer and includes links to suppliers in many countries.


    Compounding Formulas

    The following are provided by a pharmacy that has been compounding L-Ornithine and Sodium Benzoate for many years. Please do not attempt to do this at home. Ask your child’s prescribing physician to approve these instructions and then take them to a qualified compounding pharmacy. Due to added ingredients, your compounding pharmacy and physician will need to agree upon the correct dosage for your child to reach their required treatment dosage.
    Sodium Benzoate Compounding Instructions
    L-Ornithine HCL Compounding Instructions

Inclusion of particular professionals, services, products, or organizations is provided as a helpful resource and does not imply endorsement by the ACD. Initiating treatment and/or making changes to a treatment plan should always be done under the care of a qualified physician. Do not attempt to self-diagnose or self-treat a creatine deficiency.