Special Edition! February 28th is Rare Disease Day! Check out this Monthly Momentum update from KIF1A.ORG to see what is happening around the world to spread awareness and recognize those living with a rare disease. We are gearing up for major success this year that is both mission-focused and community-driven. Our pathway to treatment is…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.
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!
Join My City Med as we celebrate the global rare community in a 24-hour marathon event you won’t want to miss in celebration of Rare…Sunday, February 28, 2021 1:00 pm - 2:00 pm Online
From our friends at the National Institutes of Health (NIH) and National Center for Advancing Translational Science (NCATS): Rare Disease Day takes place worldwide, typically on…Monday, March 1, 2021 10:30 am - 5:30 pm Online
From our friends at the U.S. Food & Drug Administration on their 2021 Rare Disease Day event: The purpose of this meeting is to highlight…Friday, March 5, 2021 9:00 am - 4:00 pm Online
KIF1A.ORG hosted the largest gathering of KIF1A families, researchers, clinicians and supporters at the KAND Family & Scientific Engagement Conference on August 16–17, 2019, at Columbia University in New York City.
We are dedicated to making the latest KIF1A research and data freely and easily accessible. Visit our conference page to watch the presentations and other conference materials.
On the Blog
#ScienceSaturday posts share relevant and exciting scientific news with the KAND community. This project is a collaboration between KIF1A.ORG’s Research Engagement Team Leader Alejandro Doval, President Kathryn Atchley, Science Communication Associate Aileen Lam and Chief Science Officer Dr. Dominique Lessard. Send news suggestions to our team at email@example.com.Read More