Our bi-annual conference is a beacon of hope for the KAND community. It’s an opportunity to meet with fellow patients and families, engage with leading clinicians and researchers, and build relationships with our biotech partners. Together, we can make a difference.
Visit our Conference webpage to register and book hotel rooms at our discounted rate!
The KOALA study will be available to an estimated 40 KAND patients in the days leading up to the conference, on July 22, 23, and…
Tuesday, July 22, 2025 – Thursday, July 24, 2025 In-personWe’re excited to announce the official dates for our 2025 KAND Conference! Mark your calendars for July 25-26, 2025, and plan to join us in…
Friday, July 25, 2025 – Saturday, July 26, 2025 In-person and VirtualThese gatherings are open to anyone that is new to our community or any KAND families interested in learning more about our organization’s mission, staff,…
Thursday, July 31, 2025 12:30 pm – 2:00 pm Eastern Time Zone
Dear KIF1A.ORG Community, As the middle of the year rolls in, we’re filled with excitement and anticipation for our upcoming KAND Family & Scientific Engagement Conference happening July 25–26, 2025 in Boston, Massachusetts! This event is one of our most important opportunities to bring together patients, families, researchers, clinicians, and advocates—all united in our mission…
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Wearable Digital Data Collection Is On the Horizon: Meet BioSensics KIF1A.ORG is thrilled to announce an exciting new initiative to enhance our natural history study and accelerate progress toward clinical trials: wearable digital data collection in partnership with BioSensics, a leading innovator in digital health monitoring for rare diseases. As part of our efforts to…
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