Connect With Others

We Are Rare, but Not Alone!

A new CCDS diagnosis brings many questions for families.

  • What changes to expect from my child?
  • How to potty-train?
  • How to handle emotions and behaviors!?
  • Is this behavior “normal”?
  • How can I get my child to take their supplements?
  • Ideas for managing a low protein diet?

The list is never-ending! Join the Facebook Support Group: “Creatine Deficiency Support Group” and connect with other CCDS families that have years of experience and want to support you in this time of adjustment. You’ll be asked a few questions when you join to verify that you are a CCDS family. Please check your Facebook direct messages for a final confirmation message and you’re set. *Remember that ideas from other group members are just that- “IDEAS”. Never change your child’s treatment plan without a physician’s guidance and supervision.

Find Support on Facebook

“Creatine Deficiency Support Group”

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