National Organization for Tardive Dyskinesia’s Privacy Policy

This Privacy Policy describes the ways in which National Organization for Tardive Dyskinesia (“NOTD”, “we,” “our,” or “us”) collects, uses, and occasionally discloses when necessary personal information about you. Personal information may be collected with your permission via:, telephone calls made to NOTD, donations made to NOTD, by participating in advocacy activities, or in-person events such as lectures and conferences.

Your Rights

Regarding the use or storage of any private information gathered by NOTD, we acknowledge your right to the following:

  • To know what purpose the information gathered might be used.
  • To know with what other entities the information gathered might be shared.
  • That reasonable security measures will be implemented to protect any data collected.
  • To data accuracy and fidelity.
  • To have access to data gathered to ensure accuracy and fidelity.
  • To choose not to be included in any use of the data unrelated to the stated purpose for which the data was collected.
  • To choose not to be included in any transfer of data to any third party for any use unrelated to the stated purpose for which the data was collected.

When we collect your personal information:

NOTD collects personal information from donors, people who attend in-person meetings, lectures or exhibits, or online via our website, or by registering as a user of our TD Symptom Tracker app, or through phone calls that are made to us.

The information we collect can be comprised of the following:

Name, email address, phone and fax numbers, mailing address, place of business, title or position, or credentials.

If you make a donation, we collect your email address and mailing address in order to send you a receipt for tax purposes. As a tax-exempt charity, we do not disclose your name or contact information on our federal annual return.

We may use your mailing address or email address to send you information regarding news and events considered of interest to you personally, the tardive dyskinesia community at large, or to healthcare providers. We may on occasion also send out solicitations for donations as we are a charity. In addition, we may on occasion text you information regarding events you have registered for or expressed an interest in (e.g., support groups, webinars, etc.) You may be contacted via voicemail, text, or email to remind you of an appointment/meeting, to obtain feedback on your experience with NOTD or its representatives, to provide newsletters and marketing promotions and to provide general information regarding NOTD or its services. I consent to receive healthcare communications at the phone number or e-mail address provided. This request to receive emails and text messages applies to future communications unless I request a change in writing.

It is against our policy to lend, rent or disclose personal information to any other organization except in the circumstances listed below.

We may disclose the information we collect from you through the following means:

  • to third parties that provide services to us in connection with fulfilling your requests, including, but not limited to, third parties that provide payment processing services, and third parties that help us maintain an accounting of contributions;
  • as required by law, such as to comply with a subpoena or other legal process, or to comply with government reporting obligations;
  • when we believe in good faith that disclosure is necessary (a) to protect our rights, the integrity of our online platforms, or your safety or the safety of others, or (b) to detect, prevent, or respond to fraud, intellectual property infringement, violations of law, or other misuse of any NOTD online platforms; and
  • to service providers, advisors, potential transactional partners, or other third parties in connection with the consideration, negotiation, or completion of a corporate transaction in which we are acquired by or merged with another company or we sell, liquidate, or transfer all or a portion of our assets.

Communication consent and telephone consumer protection act

I agree that when I provide my landline or cell phone number to NOTD, I am giving express consent for NOTD to contact me at these numbers or at any number that is later acquired for me and to leave live or pre-recorded messages on voicemail or to text, regarding scheduling of events or meetings, or any services. I realize that as a consequence of providing this consent I may receive future calls or text messages that deliver pre-recorded messages by or on behalf of NOTD. Charges from your carrier may apply. Providing a telephone or cell number is not a condition of receiving services.

Making changes to your contact information

If your contact information changes, or you no longer wish to receive communications from us, or you wish to inquire about the information we have collected about you, please submit a request via email to or write to us at NOTD, P.O. Box 1111, Elfers, FL 34680.

If you do not want our website to collect information through the use of cookies, you can set your web browser to reject cookies or select to reject cookies when you first visit our website. Each browser is different, so you should check your browser’s “Help” menu to learn how to change your cookie preferences.

Changes to this Privacy Policy

If we update this Privacy Policy, we will notify you via email of the change and by posting a new Privacy Policy on this page. If we make any revisions that materially reduce the privacy protections related to your personal information, we will give you the opportunity to consent to such changes before applying them to your information.


Please direct any questions or concerns regarding this privacy policy or NOTD’s treatment of personal information by contacting us at or by phone at 1-866-TDHELP1, or you may write to us at National Organization for Tardive Dyskinesia, P.O. Box 1111, Elfers, FL 34680. We will investigate and respond to your inquiry. Your inquiry will be treated confidentially, and will not be shared with external parties, except service providers, and when necessary, any boards that govern and oversee NOTD.

(Updated 7/18/2024)