Call to Action for all KAND families and supporters that live in the US! Today, on Rare Disease Day, let’s all band together to reach out to our state’s Federal Senators and Representatives to ask for funding for rare disease research and for genetic testing to be available to all (without having to fight your…
Read MoreKIF1A.ORG is a global community dedicated to improving the lives of those affected by KIF1A Associated Neurological Disorder (KAND) and accelerating research to find a cure.
Community Call with Dr. Chung from BCH and Dr. Glass from n-Lorem!
The community call with Dr. Chung from BCH and Dr. Glass from n-Lorem is available! Watch this hour long video to learn the most up-to-date information about KAND natural history studies (ASCEND & KOALA), blood specimen collection, and potential ASO treatment with n-Lorem. Hear directly from these expert clinician researchers and scientists themselves!
With hope,
KIF1A.ORG
KIF1A.ORG Featured in Ken Burns Documentary: The Gene
The KIF1A.ORG community was recently featured in “The Gene: An Intimate History”, a film about how scientists, doctors and patients are unlocking the power of science to diagnose and treat genetic diseases. Now more than ever, our world is looking to pioneers and innovators to accelerate scientific breakthroughs that will improve and save lives. Part One of The Gene highlights the relentless KIF1A.ORG community and our mission to find a cure for KAND. Visit our webpage to see a few exclusive clips!
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Sloane’s Journey with ASO Therapy
Sloane is an adorable 3 year old with KAND. She is scheduled to be the 2nd patient in the world to receive ASO therapy for KAND. Her mother, Megan, has offered to share their experience and journey with everyone to help us understand the process and to share in their hopes, fears, challenges, and successes…
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