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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!
WITH INVITAE, YOU’RE PART OF THE SOLUTION
Thanks to people like you, the experience of living with genetic conditions can be understood like never before. The more health information we collect through patient surveys and uploaded medical reports, the closer we can get to helping communities find treatments that work.
The Association for Creatine Deficiencies is committed to providing patients and families with educational resources, advocating for early intervention through newborn screening, and promoting and funding medical research for treatments and cures for those with CCDS.
Partner organizations
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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