#ScienceSaturday posts share exciting scientific developments and educational resources with the KAND community. Each week, Dr. Dominique Lessard and Dr. Dylan Verden of KIF1A.ORG summarize newly published KIF1A-related research and highlight progress in rare disease research and therapeutic development. Goodbye with Gratitude: Dr. Dominique Lessard It is with heavy hearts that this week we say…Read More
KIF1A.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.
2023 KAND Family & Scientific Engagement Conference
KIF1A.ORG is excited to host the next KAND Family & Scientific Engagement Conference in New York at the TWA Hotel at the JFK Airport on August 3-6, 2023!
The KAND Conference will bring together patients, family members, researchers, clinicians, treatment developers, and friends of the KIF1A.ORG community. Our Keynote Speaker, Dr. Wendy Chung, will kick off the conference Saturday morning of August 5th by sharing updates on her amazing work with the Natural History and KOALA studies. Then we will move into clinical conversations, therapeutic discussions, and scientific updates for the duration of the conference.
Please note that the first half of our conference dates are reserved for KOALA study participation. This will be held August 3-5th for any KAND patient that wants to enroll.
2023 KAND Conference
KIF1A.ORG is excited to host the next KAND Family & Scientific Engagement Conference in New York at the TWA Hotel at the JFK Airport on…Thursday, August 3, 2023 - Sunday, August 6, 2023 The TWA Hotel at New York's JFK Airport
John F. Kennedy International Airport, One, JFK Access Road, Idlewild Dr
Queens, New York, USA
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!
On the Blog
A New Type of Bookworm: Bringing Patient Perspectives Into the Classroom￼
What do worms, a classroom full of students, and members of the KAND family community have in common? A lot more than you’d think! In this blog post, KIF1A.ORG Chief Science Officer Dr. Dominique Lessard describes a unique cross disciplinary experience with multiple scientific stakeholders in the rare disease space, all focused around our holistic…Read More