Family Contact Registry

The DTDS Foundation maintains a confidential database of DTDS families from around the world. This database allows us to help families make connections in their geographic areas, understand where the DTDS community resides and share with our Medical Advisory Board the number of individuals registered. We will also contact you with important updates and helpful resources for DTDS family members.

  • Make sure you are counted in the DTDS Coummunity. Our family contact registry is a short form to track the growing number of patients with DTDS around the world. The registry will be used to inform individuals with DTDS and their guardians about:
    • discoveries about Dopamine Transporter Deficiency Syndrome that may impact care decisions
    • opportunities to participate in research
    • opportunities to contribute data
  • The DTDS Family Contact Registry is not the same as our newsletter mailing list. You must opt-in to our Contact Registry by completing the form above.
  • We will not use this list for marketing or fundraising.
  • If our policy about acceptable use of our contact registry ever changes, you will be notified. You may opt-out of the contact registry at any time by emailing us at
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