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Too Rare to Ignore.
Too Important to Abandon.

When an SLC6A1 diagnosis turns your world upside down, you shouldn’t have to navigate it alone. SLC6A1 Connect drives research, supports families, and accelerates progress toward effective treatments and a cure. 

Our Mission

Advancing Research. Supporting Families. Driving Hope.

For too many families, an SLC6A1 diagnosis comes with little guidance and few answers. SLC6A1 Connect exists to change that reality. We fund research, push treatment development forward, and ensure the patient and caregiver voice is heard at every step, from diagnosis to discovery. 

If you are located outside the United States, please let us know as soon as possible so we can connect you with one of our trusted sister organizations. 

Explore Our Work

About SLC6A1 Connect

Learn how our organization was founded, meet our leadership team, and see how parents and advocates around the world are driving progress together.

Newly Diagnosed

From newly diagnosed guidance to ongoing care and treatments, access trusted resources designed to support families at every stage of the journey.

Research & Scientific Resources

Learn how our organization was founded, meet our leadership team, and see how parents and advocates around the world are driving progress together.

Symposium

Learn how our organization was founded, meet our leadership team, and see how parents and advocates around the world are driving progress together.

Donate & Get Involved

Learn how our organization was founded, meet our leadership team, and see how parents and advocates around the world are driving progress together.

Research That Drives Real Progress

Supporting Research to Unlock a Cure

SLC6A1 Connect funds innovative gene therapy and translational research focused on understanding SLC6A1 and developing effective treatments. Importantly, SLC6A1 Connect does not take an overhead rate on research grants, ensuring every dollar directly supports scientific progress.

For more information about research grants, please contact:

Amber Freed

Email: afreed@slc6a1connect.org

Resources for Researchers & Clinicians

Explore peer-reviewed scientific literature and research tools related to SLC6A1, including studies on genetics, pathophysiology, clinical features, and emerging treatments.

From Diagnosis to Next Steps

You’re Not Alone After Diagnosis

An SLC6A1 diagnosis can feel overwhelming. We help families prioritize next steps, connect with the right specialists, and stay informed about current and future clinical research opportunities.

Stories, Education & Community

Learn From Experts. Hear From Families.

Our blog features past Symposium sessions and personal patient stories, offering insight, education, and hope directly from those living with and researching SLC6A1.

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Help Us Move Faster Toward a Cure

Your support directly fuels research, accelerates treatment development, and provides families with the guidance they deserve.