Welcome to the Association for Creatine Deficiencies Patient Insights Network

  

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T
his PIN (Patient Insights Network) was created to develop a comprehensive database of individuals with Cerebral Creatine Deficiency Syndrome (CCDS). It allows patients, family members, and researchers to gather information in a safe and confidential way. By collecting critical information to understand the history and progression of CCDS, this network makes it easier for researchers to study, for patients and families to learn about treatments, and for advocates to speak on behalf of those with this condition.

This PIN seeks to grow the knowledge base surrounding CCDS. By joining this registry, dedicating your time, and sharing your family history, you will help to build better lives for everyone with CCDS. Thank you!
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T
his PIN (Patient Insights Network) was created to develop a comprehensive database of individuals with Cerebral Creatine Deficiency Syndrome (CCDS). It allows patients, family members, and researchers to gather information in a safe and confidential way. By collecting critical information to understand the history and progression of CCDS, this network makes it easier for researchers to study, for patients and families to learn about treatments, and for advocates to speak on behalf of those with this condition.

This PIN seeks to grow the knowledge base surrounding CCDS. By joining this registry, dedicating your time, and sharing your family history, you will help to build better lives for everyone with CCDS. Thank you!

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