This group continues but welcomes more families interested in a safe space to share current challenges, successes, and strategies for improving the quality of life of their children and families. https://us02web.zoom.us/meeting/register/tZAqc-2vqjkuGNYBCqGqSxr1iTMzJrxm7l79
¡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 con la […]
Connect and learn! Network meetings are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for the discovery of the SCN8A gene’s association with pediatric epilepsy. These groups will provide you with a chance […]
Our Severely Impacted Children meetings will primarily focus on the issues important to children who are Non-ambulatory, G/J fed, and have Global Developmental Delays. Connect and learn! Network meetings are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer opportunities to connect with Dr. Hammer, an SCN8A parent […]
Learn more about how the Praxis compound for SCN8A and SCN2A - PRAX-562 - works, how you can express your interest in the study and listen in on a Fireside Chat with Brian Pfister, Vice President Global Medical Affairs at Praxis Precision Medicine and Dr. Michael Hammer. 1:00 PM ET6:00 PM - UK7:00 PM - […]
地域および変種のネットワークは、ライブサポートと研究の更新のためのあなたの場所です。 SCN8Aアライアンスが主催するSCN8aネットワークは、scn8aの親であり、scn8a遺伝子と小児てんかんとの関連の発見を担当する遺伝科学者であるHammer博士と接続する機会を四半期ごとに提供しています。 これらのグループは、あなたの旅を共有し、あなたの経験に関連する質問をし、あなたの地域の地元のリソースについて議論し、最新のSCN8Aの開発につ Connect and learn! Regional and variant networks are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer quarterly opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for the discovery of the SCN8A gene's association with pediatric epilepsy. These groups […]
Join the team from the International SCN8A Alliance - Dr. Hammer, Gabi and JayEtta - as well as SCN8A mom, researcher and Board Member Madeleine Oudin, PhD for a discussion about Infantile Spasms (IS) in SCN8A. We will share some emerging research and learnings from our Registry, talk about what infantile spasms are (and are […]
Our Mild/Moderately Impacted Children meetings will primarily focus on the issues of Seizure Control, Medications, Development, and Therapies. Connect and learn! Network meetings are your place for LIVE support and research updates. SCN8A networks, sponsored by the SCN8A Alliance, offer opportunities to connect with Dr. Hammer, an SCN8A parent and the Genetic Scientist responsible for […]
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. […]
This is a regular space for families to come together, connect, ask questions and build community. Newly diagnosed with SCN8A? Not so newly diagnosed but still have questions? Want to connect with and support other SCN8A families? Join Us! https://us02web.zoom.us/meeting/register/tZAoduyqqD8tHNXWBkTuTlNUus-hZ9Zi4UuY
Unisciti a noi per connetterti con il Dr. Hammer, un genitore SCN8A e il genetista responsabile della scoperta dell'associazione del gene SCN8A con l'epilessia pediatrica. Avrai la possibilità di condividere il tuo viaggio, porre domande, conoscere gli ultimi sviluppi di SCN8A E connetterti con altre famiglie italiane. Questo incontro si svolge in collaborazione con i […]
POSTPONED UNTIL AUGUST 5th We have new results in and want to share them with you! In this session, we will be providing the community an update on the Diagnosis & Treatment Guidelines process. We'll walk through the process, share some preliminary results and outline what the next steps are. We also want to hear […]
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.
