Meet the New KIF1A.ORG

Meet the New KIF1A.ORG

Today we relaunched our home at KIF1A.ORG. This new digital platform makes it easier for the global KIF1A community of families, researchers, clinicians, partners and supporters to advance our mission: Improve the lives of those affected by KIF1A Associated Neurological Disorder and accelerate research to find a cure. When KIF1A.ORG was established in 2017, there were fewer than…

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Cost Analysis of Starting a Rare Disease Foundation

By Luke Rosen Originally published August 31, 2017 As our foundation thrives, more families with KIF1A find our community, and scientific discovery is taking flight, an important conversation emerges about how family and patient-led foundations start — and if it’s possible to facilitate the discovery of treatment for rare disease. A large part of that…

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