If you are treating someone with a KIF1A-related disorder, please connect the family to KIF1A.ORG. We provide resources and support to families affected by this rare, genetic disease. KIF1A.ORG is a global community and language is never a barrier. Here are a few places to start:

  • The Newly Diagnosed page has helpful information for families dealing with a new KIF1A diagnosis
  • For an overview of KIF1A Associated Neurological Disorder (KAND), including symptoms, progression and recommendations for management, click here.
  • Review our resources pages related to Spasticity in KAND, Epilepsy in KAND, and Vision in KAND for specific diagnostic and therapeutic recommendations.
  • To learn about current data available through our natural history study, click here.

If you have any questions or referrals, please contact us.