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.

2025 KAND Conference

Newly Diagnosed? Register with our organization.

2025 KAND Conference!

Join us virtually: July 25th and 26th, 2025
9:00am-5:30pm ET

Conference ZOOM LINK

Upcoming Events

  • Aug 21

    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, August 21, 2025 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • Aug 28

    3rd 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…

    Thursday, August 28, 2025 12:30 pm – 2:00 pm Eastern Time Zone
    Online via Zoom
  • Sep 25

    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, September 25, 2025 12:30 pm – 2:00 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

From KIF1A.ORG

Genetic Testing Action Day – July 25th

Join the Movement: Genetic Testing Action Day—July 25, 2025 Empowering Families to Start Genetic Join us for the inaugural Genetic Testing Action Day on July 25! In collaboration with CureSHANK and other rare disease organizations, we’re proud to support Start Genetic—a national movement dedicated to raising awareness about the critical role of genetic testing in…

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