Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission:

Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure.

When KIF1A.ORG was established in 2017, there were fewer than 30 individuals known to have KAND. Now, there are over 200. KAND is becoming recognized by the scientific community as a drastically underdiagnosed rare disorder, likely affecting tens of thousands of people around the world. Although not as rare as once thought, the fact remains: KAND is degenerative.

There is no treatment or cure for KAND. Yet. The growing KAND community presents a significant unmet need for treatment. We must act urgently and efficiently to give our children a meaningful and happy quality of life before time runs out. At KIF1A.ORG, we’re up for the challenge.

On our new site, it’s easier for families to learn about KANDcurrent care recommendations and the latest research developments in an easy-to-read format: Research Simplified.

We’ve also made it easier for researchersclinicians and biotechs to connect with KIF1A.ORG to advance research, improve care and accelerate the treatment development process.

Some of our other favorite features:

  • Learn about our first KAND Family and Scientific Engagement Conference and submit your event registration
  • Translate KIF1A.ORG into your native language with ease using the Translate Website tool
  • Learn about our community and impact
  • Sign up for our Newsletter to follow our progress

Lastly, meet our superheroes. They are the motivation behind everything we do. Keep up with our blog as we add more superhero profiles so you can get to know our growing community.

We thank PCORI and private donors for making the new KIF1A.ORG possible and are grateful for the team at Wired Impact who brought our vision to life.

Welcome to KIF1A.ORG. If you are here, you are part of the team. Together, we will achieve our mission.


  1. 1
    Cindy Ross on May 3, 2019

    I am so excited about this my granddaughter has kif1a and I am here to understand this disease better and help my family provide the right care for my granddaughter! I also have a question about schooling for these children it what best suits them.

    1. 2
      katatchley on May 3, 2019

      Hi Cindy! Because KIF1A does not affect any two children the same way, we see a wide range of school settings and accommodations for our kids. KAND and school is a discussion topic at our upcoming conference. The more we learn from our community the more we will be able to share insights and tips.

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