KIF1A Facebook Support Group

Connecting Families 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


  • 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.