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!
These 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, June 26, 2025 12:30 pm – 2:00 pm Eastern Time ZoneThe 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 Virtual
KIF1A.ORG Newsletter – May 2025 Dear KIF1A.ORG Community, It has been almost four weeks since I started assimilating into the role of KIF1A.ORG’s new Executive Director and, WOW, what a four weeks it has been. From connecting with community members, to learning about our ongoing and upcoming projects, I am filled with excitement about everything…
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A message from London’s family in New York, USA: London is our beautiful and sassy little 7 year old girl with a BIG personality. London was diagnosed with KIF1A in 2022. It has been a journey and still is but nothing stops London from letting her personality shine. She’s definitely the Queen Bee! London loves…
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