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882387017
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findingnori.org
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Gilbert
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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Discussions
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1. How can NGOs like the Finding Nori Foundation effectively raise awareness about ultra-rare genetic disorders and the challenges families face in securing a diagnosis and treatment?
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Brooklyn Simmons
2 days ago
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2. What role do you think advocacy plays in influencing research funding for conditions related to PAX5 and ALG13, and how can families impacted by these disorders get more involved?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
Incredible work, Finding Nori Foundation! It’s inspiring to see you making strides in the fight against ultra-rare genetic disorders. Together, we can bring hope to families like yours! 💙✨
Brooklyn Simmons
Product Manager
Thank you for advocating for those with undiagnosed diseases! Every step towards research funding brings us closer to finding answers and potential treatments. Let’s keep pushing for progress! 🙌🌟
Brooklyn Simmons
Product Manager
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