KIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.

KIF1A.ORG Featured in Ken Burns Documentary: The Gene

The KIF1A.ORG community was recently featured in “The Gene: An Intimate History”, a film about how scientists, doctors and patients are unlocking the power of science to diagnose and treat genetic diseases. Now more than ever, our world is looking to pioneers and innovators to accelerate scientific breakthroughs that will improve and save lives. Part One of The Gene highlights the relentless KIF1A.ORG community and our mission to find a cure for KAND. Visit our webpage to see a few exclusive clips!

Upcoming Events

  • 2023 KAND Conference

    KIF1A.ORG is excited to host the next KAND Family & Scientific Engagement Conference in New York at the TWA Hotel at the JFK Airport on…

    Thursday, August 3, 2023 - Sunday, August 6, 2023 The TWA Hotel at New York's JFK Airport
    John F. Kennedy International Airport, One, JFK Access Road, Idlewild Dr
    Queens, New York, USA
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Our Superheroes

Meet some of our superheroes battling KIF1A Associated Neurological Disorder. They're the bravest people we know.

KAND Conference

KIF1A.ORG hosted the latest KAND Family & Scientific Engagement Conference on August 13, 2022 to share the latest in KAND research and therapeutic development, review common KAND symptoms and care considerations, interact with members of the community, and hear from the experts: KAND patients and families.

We are dedicated to making the latest KIF1A research and data freely and easily accessible. Visit our conference page to watch the presentations and other conference materials.

Our Impact

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On the Blog

#ScienceSaturday: November 19, 2022

#ScienceSaturday: November 19, 2022

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research and highlight progress in rare disease research and therapeutic development.

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