KIF1A Facebook Support Group

Connecting Families

KIF1A

KIF1A Facebook Support Group

 KIF1A.org is a patient-led nonprofit organization. Our two primary objectives are:


1) To connect families, physicians and caretakers of children diagnosed with KIF1A

2) To fund and accelerate research leading to treatment

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  • KIF1A genetic mutations cause a progressive and neurodegenerative syndrome. The condition does not have a specific name and is referred to as "KIF1A-related disorder."


  • Doctors and families have to work together quickly in order to help children with mutations in KIF1A.


  • Our goal is to connect families, physicians and caretakers committed to discovering treatment for children living with KIF1A-related disorder. To find other families affected by KIF1A fill out the form below and somebody will reply within 24 hours.