Community

Our relentless community thrives because of people. Our people are patients, caregivers, scientists, advocates, innovators and families. Our global community is united by one mission: improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure.

Newly Diagnosed?

KIF1A.ORG exists to welcome patients and families into a supportive community with resources and information. If you or a loved one was recently diagnosed with a genetic mutation in KIF1A, you are in the right place. Welcome to our family.

Join Us

Superheroes

Meet our KIF1A superheroes and hear their incredible stories. The epic strength of KIF1A families motivate us to urgently achieve our mission.

Families

Navigating the new normal of a KAND diagnosis is complex and we’re here to support, inform and listen to each other. We provide resources to families affected by KIF1A and communicate openly between families, researchers, physicians, educators and therapists. You’re not alone.

Researchers

Clinically impactful KIF1A research means collaboration and urgency. We have a robust pre-clinical program collecting extensive longitudinal data and testing pre-clinical therapeutics on animal models and cell lines. All of our information is freely accessible to the scientific community, so connect today and ask us questions about our kids. We can give you a clear clinical picture of what the disease is and what a meaningful clinical change would be from a new therapeutic.

Our KIF1A researchers are superheroes. They include the Chung Lab at Boston Children’s Hospital, Columbia University Medical Center, The Jackson Laboratory, Vallee Lab, Berger Lab and more. If your research includes kinesins, motor proteins, neurodegeneration, epilepsy or gene therapy, we want to hear from you.

Clinicians

We don’t just connect patients and families, we connect clinicians. Our community relies on your care and communication. We can tell you what specialists our families go to in every country, what medications our children take and any information that can support your work. If you have a patient diagnosed with KIF1A Associated Neurological Disorder (KAND), please connect with KIF1A.ORG.

Rare Disease Advocates

Collaborating with partner foundations and being present in the rare disease community are core elements of KIF1A.ORG. We share best practices and ideas to improve the quality of life for our children and to drive rare disease research. KIF1A.ORG advocates for every rare disease community. Whats ours is yours, and together we are strong.