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.

Rare Disease Month initiative #1

February 28th is Rare disease Day, and this year we are celebrating with two important initiatives!

1. Miles that Matter for KIF1A Challenge:
Join us starting Feb 1-Feb 28 in our first ever virtual walk! You can participate from anywhere in the world and complete 28 miles, in the 28 days of February, culminating on Rare Disease Day – February 28th! Because KAND robs many of our patients of their ability to walk, We Don’t Take a Single Step for Granted! and we are honoring our patients with this challenge. You can complete your challenge with any movement you prefer! Run, walk, stroll, carry, wheel, crawl, swim… it’s up to you! All proceeds benefit KIF1A.ORG.

Rare Disease Month initiative #2

2. Show your LOVE for a KAND CURE!
Because February is also Valentine’s Day ❤️, we encourage everyone with a KIF1A mutation to help our community’s research efforts by enrolling in ASCEND!

For the 200 patients already enrolled, please complete your annual survey updates by February 14th, in honor of our patients this Valentine’s Day! Your survey link will be emailed to you Feb 1. If you have any questions, email ASCENDstudy@childrens.harvard.edu.

Enroll Today

Upcoming Events

Mar 27

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 27, 2025 12:30 pm – 2:00 pm Eastern Time Zone
Online via Zoom
Apr 24

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 24, 2025 12:30 pm – 2:00 pm Easter Time Zone
Online via Zoom
May 14

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 14, 2025 1:00 pm – 2:30 pm Eastern Standard Time
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.

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

Monthly Momentum

February Monthly Momentum

February 27, 2025February 27, 2025

Dear KIF1A.ORG Community, This Friday, February 28th, 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 truly inspiring! Our Miles that Matter for…

Monthly Momentum

January Monthly Momentum

January 29, 2025January 29, 2025

Dear KAND Community, This February, in honor of Rare Disease Day on 2/28, we have two important initiatives underway! Please read below to learn about our ASCEND survey completion challenge and our Miles That Matter for KIF1A campaign. These initiatives are critical to our community—driving research participation and raising awareness and funds to advance our…