Patient Resources

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.

Information at a Glance
Drug Development Webinar with ACD & FDA
FDA Information on N of 1 Trials
NEW ENGLAND JOURNAL OF MEDICINE

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.

Patient Registry One-Pager

Patient Registry FAQs

Patient Registry Tip Sheet

Patient Registry Registration Procedure

CreatineInfo Registry Brochure

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

Ramblin’ Rare

Ramblin’ Rare is a podcast about rare diseases, the families they impact, and scientists aiming to change their world through their work. Sponsored by the Association for Creatine Deficiencies. Look for “Ramblin’ Rare” wherever you get your podcasts!