Get Involved

Patient Registry

The ACD Patient Registry was created to develop a comprehensive data bank of individuals with CDS. This registry will allow patients, family members and researchers to gather information in a safe, confidential, online database.

It is important to collect critical information to understand the history and progression of CDS, to make it easier for researchers to study, for patients and families to learn about treatments and for advocates to speak on behalf of the CDS community.

Registration Link/Form

Register Here


If you are interested in helping the ACD, please contact us at


It is critical that we tell the ACD story and your individual stories to a much broader audience. Our message must be consistent and clear in order to make Creatine Deficiency Syndromes more readily recognizable and to create a sense of urgency among the medical community.

Host A Fundraiser

The ACD needs your help to raise awareness of Creatine Deficiency Syndromes. A great way to raise awareness and educate others is to have a fundraising event. Donated funds to the ACD are used to  raise awareness, advocate and fund medical research.

Some examples of fundraisers are: Bake Sales, Car Wash, Dinners, Wine Tasting, Raffles, Auction, Garage Sale, Golf Outing, Lemonade Stand.  No event is too small. We need your help, “Together We Are Strong”.

Donate Now