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Welcome to the Association for Creatine Deficiencies Patient Registry

This registry was created to develop a comprehensive data bank of individuals with Creatine Deficiency Syndromes (CDS).  This registry will allow patients, family members and researchers to gather information in a safe, confidential, online database.  It will collect critical information to understand the history and progression of CDS, to make it easier for researchers to study, for patients and families to learn about treatments and for advocates to speak on behalf of the CDS community.  This registry will ultimately grow the knowledge base that will build better lives for everyone with CDS.  Please share your time and family history by joining this registry.  Thank you!

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Who We Are

The Association for Creatine Deficiencies mission is to eliminate the challenges of Creatine Deficiency Syndromes through education, advocacy and medical research.  The Association for Creatine Deficiencies is a non-profit 501(c)(3) organization committed to provide patient, family and public education, to help raise awareness and advocate for early intervention, and to promote and fund medical research for treatments and cures for Creatine Deficiency Syndromes.