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 […]
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 […]
Our caregivers group meets the first Sunday of January, April, July, and October to discuss what's new with SCN8A and how we can best support our children. Please join us to learn more! Register here!
¡Bienvenida! Conéctate y aprende - las redes regionales y variantes son su lugar para recibir soporte EN VIVO y actualizaciones de investigación. Las redes SCN8A, patrocinadas por SCN8A Alliance, ofrecen oportunidades trimestrales para conectarse con el Dr. Hammer, un padre de SCN8A y el científico genético responsable del descubrimiento de la asociación del gen SCN8A […]
This region meets the third Wednesday of January, April, July, and October to discuss what's new with SCN8A. Please join us to learn more and meet other families in your region! Register here!
Our loss of function group meets the fourth Saturday of January, April, July, and October to discuss what’s new with SCN8A. Please join us to learn more and meet other families! Register here!
This region meets the first Saturday of February, May, August, and November to discuss what's new with SCN8A. Please join us to learn more and meet other families in your region! Register here!
This variant meets the second Saturday of February, May, August, and November to discuss what’s new with SCN8A. Please join us to learn more and meet other families with your variant! Register here!
This region meets the third Wednesday of February, May, August, and November to discuss what's new with SCN8A. Please join us to learn more and meet other families in your region! Register here!
This region meets the third Friday (Saturday Japan) of February, May, August, and November to discuss what's new with SCN8A. Please join us to learn more and meet other families in your region! Register here!
This variant meets the fourth Saturday of February, May, August, and November to discuss what’s new with SCN8A. Please join us to learn more and meet other families with your variant! Register here!
Conecte-se e aprenda! As redes regionais e variantes são o seu lugar para suporte ao vivo e atualizações de pesquisa. As redes SCN8A, patrocinadas pela SCN8A Alliance, oferecem oportunidades trimestrais de contato com o Dr. Hammer, um pai SCN8A e o cientista genético responsável pela descoberta da associação do gene SCN8A com a epilepsia pediátrica. […]
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.
– Keep Exploring –
IMPORTANT: While this consensus data provides new and valuable insights about best practices in the diagnosis and treatment of SCN8A, this is not medical advice. It can inform clinicians and caregivers alike in developing optimal treatment plans for each individual.
