We provide a variety of support and resources for our families, from an online community of parents to connect with to accurate information that you can pass along to your doctors.

If you’re connecting with KIF1A.ORG for the first time, we invite you to complete the form on the Newly Diagnosed page. From there, we’ll be in touch with additional resources and support for you to learn more about the disorder, our community and be able to ask questions or share advice on what’s worked well for your family.

Private Support Group

Request to join our private Facebook group, full of other families caring for or affected by KIF1A Associated Neurological Disorder (KAND).

2019 KAND Conference

Our upcoming conference is a free event held in New York City that unites families, medical professionals and researchers to discuss KIF1A Associated Neurological Disorder, caring for patients and the road to a cure. Learn more about the family conference and send us your registration.

2017 Family Meeting Presentation

It’s okay if you weren’t able to make our first family meeting. You can still download the presentation! It includes an overview of genetics, the KIF1A gene and variants, and research studies looking into symptoms of the disorder.

Download the Presentation

Additional Resources