KIF1A
KIF1A.ORG Kids

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.

2026 Miles that Matter is LIVE! Join us!

Newly Diagnosed? Register with our organization.

2025 KAND Conference Presentations & slides are available!

Presentations & Slides

Upcoming Events

  • Mar 12

    Newly Diagnosed Meetup

    These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…

    Thursday, March 12, 2026 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • Apr 9

    Newly Diagnosed Meetup

    These gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…

    Thursday, April 9, 2026 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • May 13

    2nd Quarter Community Call, KIF1A.ORG

    Join us each quarter to dive into current community events, exciting research opportunities, scientific updates, and more! Your participation is essential, and we truly value…

    Wednesday, May 13, 2026 2:00 pm – 3:30 pm Eastern Time Zone
    Online via Zoom
View All Upcoming Events ›

Our Superheroes

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

Sadie
Jaybriel
Susannah
Brayden
Lily
Ashley
Collier
Meet Our Superheroes

Featured in Ken Burns Documentary

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.

See Exclusive Clips

Our Impact

0 + people diagnosed with KAND
0 + Research Network Members
0 + countries represented
See Our Impact

On the Blog

February Monthly Momentum
Monthly Momentum

February Monthly Momentum

Updates From KIF1A.ORG Happy Rare Disease Day from all of us at KIF1A.ORG! Today, we join the global community in honoring Rare Disease Day—a day dedicated to raising awareness and shining a light on the millions of people affected by rare diseases. Here at KIF1A.ORG, we’ve been gearing up all month, and the momentum is building!…

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January Monthly Momentum
Monthly Momentum

January Monthly Momentum

Updates From KIF1A.ORG Happy New Year from all of us at KIF1A.ORG! Our first month of 2026 has been as busy as ever as we look forward to another great year. Thank you for reading as we share what we’ve been up to this month, including: Welcome Our New Fundraising Coordinator, Erin Zaranec! We are…

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