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.

2023 KAND Conference Presentations

The 2023 KAND Conference Presentations are ready for your viewing! Check them out to learn the most up-to-date data about KAND and hear directly from our patients, caregivers, clinicians, scientists, and researchers themselves!

Thank you to everyone who made this conference possible.

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

January 2024

January 2024

Bidding Sean Calamia a Farewell! Dear Sean, As you embark on a new chapter in your journey, we want to express our heartfelt gratitude for your unwavering dedication and contributions to KIF1A.ORG and our warriors. Your tireless efforts have made a profound impact on our community, and your passion for supporting KAND patients and families…

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#ScienceSaturday: February 17, 2024

#ScienceSaturday: February 17, 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 Overarching pathomechanisms in inherited peripheral neuropathies, spastic paraplegias, and cerebellar ataxias What causes KAND? At the simplest level,…

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