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Home | FindingNori.Org The Finding Nori Foundation Home About Meet the Team Finding Joy Blog Resources Publications DONATE Contact Upcoming Events More Raising research funding for PAX5 and ALG13 related neurological disordersEmpowering families with ultra rare undiagnosed diseases to find answers Our Mission Our mission is to advance scientific research through fundraising and advocacy for ultra rare undiagnosed genetic disorders. Our mission starts with finding a biomarker and precision medicine candidates for ALG13 and PAX5 related neurological disorders Inspired by Our Daughter Nori Our world turned upside down when our daughter Nora Nori was diagnosed with an ultra rare and catastrophic form of epilepsy at just 4 months old. In the months that followed we embarked on a diagnostic odyssey to find the cause of Nora39s epilepsy and global developmental delays. Despite extensive genetic testing with some of the best research institutions in the world the genetic cause of Nora39s disorder is still inconclusive although a few variants of uncertain significance VUS have been identified.
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