Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission:
Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure.
When KIF1A.ORG was established in 2017, there were fewer than 30 individuals known to have KAND. Now, there are over 200. KAND is becoming recognized by the scientific community as a drastically underdiagnosed rare disorder, likely affecting tens of thousands of people around the world. Although not as rare as once thought, the fact remains: KAND is degenerative.
There is no treatment or cure for KAND. Yet. The growing KAND community presents a significant unmet need for treatment. We must act urgently and efficiently to give our children a meaningful and happy quality of life before time runs out. At KIF1A.ORG, we’re up for the challenge.
Some of our other favorite features:
- Learn about our first KAND Family and Scientific Engagement Conference and submit your event registration
- Translate KIF1A.ORG into your native language with ease using the Translate Website tool
- Learn about our community and impact
- Sign up for our Newsletter to follow our progress
Lastly, meet our superheroes. They are the motivation behind everything we do. Keep up with our blog as we add more superhero profiles so you can get to know our growing community.
Welcome to KIF1A.ORG. If you are here, you are part of the team. Together, we will achieve our mission.