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 11, 2026 12:30 pm – 2:00 pm Eastern Time ZoneThese 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 9, 2026 12:30 pm – 2:00 pm Eastern Time ZoneThese 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, August 13, 2026 12:30 pm – 2:00 pm Eastern Time Zone
It’s KIF1A Day! Every April 28th, we come together to honor our community on KIF1A Day—a day to celebrate our incredible patients and raise urgent awareness for KIF1A-Associated Neurological Disorder (KAND) and the critical need for treatments and a cure. KIF1A Day is not only a moment of reflection and recognition, but a powerful call to action: to raise…
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What does Policy and Advocacy look like in our KIF1A community? It means advocating for treatment development, improving access to care, federal funding, and healthcare services. It means engaging patients and families in legislative discussions and regulatory initiatives. It means empowering and shining a light on patient voices and experiences. We are a community of…
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