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.

Community Call with Dr. Chung from BCH and Dr. Glass from n-Lorem!

The community call with Dr. Chung from BCH and Dr. Glass from n-Lorem is available! Watch this hour long video to learn the most up-to-date information about KAND natural history studies (ASCEND & KOALA), blood specimen collection, and potential ASO treatment with n-Lorem. Hear directly from these expert clinician researchers and scientists themselves!

With hope,



Our Superheroes

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

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!

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On the Blog

February 2024

February 2024

Call to Action for all KAND families and supporters that live in the US! Today, on Rare Disease Day, let’s all band together to reach out to our state’s Federal Senators and Representatives to ask for funding for rare disease research and for genetic testing to be available to all (without having to fight your…

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#ScienceSaturday: April 13, 2024

#ScienceSaturday: April 13, 2024

#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dylan Verden of KIF1A.ORG summarizes newly published KIF1A-related research and highlights progress in rare disease research and therapeutic development. KIF1A-Related Research Clinical exome sequencing uncovers genetic disorders inneonates with suspected hypoxic–ischemic encephalopathy:A retrospective analysis Brain injuries and developmental disorders…

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