Privacy Policy

The Association for Creatine Deficiencies, Inc. (ACD) Privacy Policy applies to ACD’s main website at creatineinfo.org. Our postal address is P.O. Box 1007, Pine Knoll Shores, N.C. 28512. We can be reached via email at contact@creatineinfo.org.

When you visit the ACD website, our server does not automatically capture your domain name or email address. You may use the ACD website without disclosing personal information.

ACD is committed to protecting the privacy of our site users and maintaining the confidentiality of all collected personal information. Personal information can be submitted through our on-line forms to make a donation, to contact us, or to furnish information to ACD’s Patient Registry.

Information Collection and Use:

Donor information may include name, address, telephone number, email address and amount donated. This information will be entered into our donor database for the use of processing payments, distribute receipts, and to send out “thank you” letters, to communicate with donors about upcoming fundraising events and other activities of the ACD. Donor information may also be used for record keeping and reporting to government agencies as required by law.

Contact Us information will be used to collect feedback, suggestions, and other comments. This information helps improve our site and service to you.

Patient Registry information has no contact with volunteers. Your personal information is stored in a secure environment and access to your information is restricted only to authorized individuals. The Registry is designed to collect a basic census of patient diagnosis and to notify individual of any clinical trial(s) that ACD is informed of and/or aware of. Notification will be done via e-mail or telephone. This will help ACD’s advocating efforts.

The ACD may collect information at different points in our website. We do not sell, trade, publish or rent our website visitor’s personal information to others.

Your Consent

By using the ACD website, you consent to the collection and use of the information described above and that you supplied.

ACD Creatine Deficiency Syndrome Registry

Dear Patient, Parent, or Caregiver:

Thank you for your participation in the Association for Creatine Deficiencies Patient Registry. This basic registry was designed to help collect names of patients with a Creatine Deficiency Syndrome. The registry will only be used for two purposes:

  • To collect a census of each diagnosis. This information will help assist in advocating efforts for newborn screening, research and clinical trials.
  • To notify participant of any clinical trial that ACD is informed of and/or aware of.

Patient information will be kept private within the ACD Database. If you wish to be taken off registry, a written notice will be accepted to remove your information.

Thank you for your participation!

Register Here