CCDS Day & Rare Disease Day

In 2017 we celebrated our first Cerebral Creatine Deficiency Syndrome Awareness Day on February 1st. This is a fitting time of year to recognize the importance of these rare disorders, as the world-wide Rare Disease Day falls on February 28th. The month was filled with posts of support and sharing CCDS education amongst all. The sense of community was inspiring as profiles on FaceBook were changed to a virtual CCDS ribbon and pictures were posted of families wearing “We Are Rare” t-shirts. ACD is already planning towards the next CCDS Day, February 1, 2018!

The Robinson Family on CCDS Day