A Focus on KAND

Care-for-Rare supports innovative research into KIF1A Associated Neurological Disorder (KAND)

International collaboration is a hallmark of Care-for-Rare, and we are delighted to announce the funding of an ongoing research project focused on KIF1A Associated Neurological Disorder (KAND).  The collaboration, initiated by a generous donor in Germany, aligns the Care-for-Rare Foundation and Care-for-Rare America with KIF1A.ORG, a global community dedicated to improving the lives of those affected by KAND and accelerating research to develop treatments and a cure.

About KAND

Child with head in bandage lying on the floor while playing with a toy truck.KAND is a neurodegenerative disorder caused by mutations in the KIF1A gene. Mutations in KIF1A cause a constellation of severe medical challenges, including spastic paraplegia, epilepsy, intellectual disability, optic nerve atrophy, cerebellar atrophy, peripheral neuropathy, and autism.  Primarily a pediatric-onset disorder, KAND has a progressive course and can cause severe, life-threatening complications.  In addition to family support and patient advocacy, KIF1A.ORG powers collaborative and translational research to rapidly discover treatments for this generation of individuals affected by KAND.

KIF1A.ORG leads multiple initiatives to de-risk and accelerate therapeutic development, and represents over 400 patients from more than 40 countries.  These initiatives include an active KIF1A Research Network, direct research funding and critical tools for development, including natural history data; endpoint enabling studies; disease models; biomarkers; screening platforms and assays; outcome measures; and a re-contactable comprehensive database of patients and caregivers.  KIF1A.ORG makes all scientific resources openly available to the scientific community, including biotech. For more information, visit www.kif1a.org.

You can help. 

KIF1A Associated Neurological Disorder is a new disease, and research is rapidly underway to discover treatment.  Every day we are closer to understanding KIF1A and how brain function is disrupted by mutations in the gene.  Accelerating this research will lead to rapid development of medicine.  Time is as much our enemy as nature.  We urgently need your support to save the lives of those affected by KIF1A.  DONATE TODAY.