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Emerging Genetic Treatments for SCN8A and a look at n-of-1/nLorem

Join us to hear from SCN8A parents and researchers, Madeleine Oudin and Chris Burge, to learn about different kinds of emerging genetic therapies, what is in the pipeline for SCN8A and hear about their journey to find an ASO treatment for their daughter, Margot, with a new company called nLorem. You can register in advance […]

Fast Inactivation Meeting

This group meets on the fourth Saturday of March, June, September, and December to discuss what’s new with SCN8A. The Fast Inactivation Group is for individuals with the following variant locations: "p." number in one of the following ranges 1310-1325, 1466-1501, 1640-1654, 1760-1771. Please join us to learn more and meet other families with fast […]

We would like to extend our thanks to Neurocrine Biosciences and Praxis Precision Medicines for their support of these meetings which bring improved quality of life to families and allows them opportunities to learn, connect, and contribute to the understanding of SCN8A.

   

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