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 Associated Neurological Disorder

KIF1A Associated Neurological Disorder is a rare neurodegenerative disorder with a progressive course. Urgently supporting KIF1A research is critical to discovering a cure for KAND.

Upcoming Events

  • Rare Disease Day 2020

    Mark your calendars for February 29, 2020, and celebrate Rare Disease Day with KIF1A.ORG! Information coming soon.

    Saturday, February 29, 2020 Global Event
  • KIF1A Day 2020

    Mark your calendars for April 28, 2020, and celebrate KIF1A Day with KIF1A.ORG! Information coming soon.

    Tuesday, April 28, 2020 Global Event
View All Upcoming Events ›

Our Superheroes

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

Attend the KAND Conference

KAND Family & Scientific Engagement Conference

KIF1A.ORG hosted the largest gathering of KIF1A families, researchers, clinicians and supporters at the KAND Family & Scientific Engagement Conference on August 16–17, 2019, at Columbia University in New York City.

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

0 + people diagnosed with KAND
$ 0 + raised to accelerate research
0 + countries represented
See Our Impact

On the Blog

#ScienceSaturday: December 7, 2019

#ScienceSaturday: December 7, 2019

#ScienceSaturday posts share relevant and exciting scientific news with the KAND community, and are compiled by Alejandro Doval. Alejandro is from Spain and serves as Team Leader of the KIF1A.ORG parent-led Research Engagement Team. Send news suggestions to our team at impact@kif1a.org.

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Urgent Message from KIF1A Families: We Need NIH Funding

Urgent Message from KIF1A Families: We Need NIH Funding

Members of Congress, We are waiting for NIH funding, but our children who are battling a rare neurodegenerative disorder are running out of time. The continuing resolution that the NIH is currently operating under harms the rare disease community by blocking critical funding for scientific research. We need you to pass a full-year budget that…

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