Associations around the world
The foundation of the SLC6A1 EUROPE Alliance was largely made possible thanks to Lindsay Randall, founder and CEO of SLC6A1 CONNECT UK and mother of Arthur and Eden, both affected by SLC6A1 neurodevelopmental disorder (SLC6A1-NDD).
Thanks to her vision, determination, and energy, she has played a key role in establishing our Alliance, which continues to grow by bringing together families, doctors, and researchers across Europe.
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We are deeply grateful to Lindsay for her remarkable contribution and unwavering commitment.
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For more information about the SLC6A1 EUROPE Alliance, please visit: www.slc6a1europe.org
Amber Freed is the founder and CEO of SLC6A1 CONNECT, the American and global patient association that has had, and continues to have, a significant impact on advancing SLC6A1 research.
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Amber is the mother of twins, Riley and Maxwell. Maxwell was diagnosed with the SLC6A1 mutation at 18 months of age. With extraordinary determination, Amber turned the pain of her son’s diagnosis into purpose and has since been tirelessly dedicated to the SLC6A1 cause.
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Our community is profoundly grateful to Amber and to everyone who supports her daily for their incredible commitment.
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For more information about the American association, visit:
With the continuous increase in diagnosed cases, interest in the SLC6A1 mutation is growing exponentially.
We are pleased to see the rising number of scientific publications and the growing participation of patient representatives around the world.
Alongside the well-established SLC6A1 Kids Australia, new associations are emerging in Latin America and in many other regions across the globe.
SLC6A1 CONNECT runs the SLC6A1 Family Support Group, the largest Facebook group for families affected by the mutation. The group is for parents and relatives only. It provides a safe place to share experiences, ask questions, receive support, and stay informed about research, therapies, and scientific developments.
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The group is private: to join, a request must be submitted and a few short questions answered.