It’s official! February 1st is “Cerebral Creatine Deficiency Syndrome Awareness Day.”
Help spread awareness of CCDS by celebrating this day in your community.
Some ideas include:
The Advisory Committee on Heritable Disorders in Newborns and Children will be having this quarterly meeting via webinar. If you would like to make your voice heard regarding the inclusion of GAMT on newborn screenings nationwide, you may register to make public comments at the ACHDNC website. Registration opens approximately two weeks before the meeting.
CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day.
Help us join with other rare disease groups in spreading CCDS Awareness on February 28, 2017.
Rare Disease Day is a worldwide initiative. For more information on this international event, visit rarediseaseday.org.
For more information about Rare Disease Day in the US, click here.
Shop and support ACD to get your CCDS Awareness merchandise today!
ACD’s partnership page can be found here.
For ideas of how to participate in rare disease day and both support this initiative and raise awareness of Cerebral Creatine Deficiency Syndromes, Click Here.
Texas Children’s Hospital National featured this CCDS story for Rare Disease Awareness Week: “My Son’s Story”