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 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 from you! The guidelines […]
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 […]
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 […]
Connect and learn! 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 will provide you with a […]
A special space for caregivers supporting those with SCN8A to find both solace and strength in a community that knows what life with SCN8A means. You can share challenges, gain insights into care techniques, and stay abreast of research and resources to help on your caregiving journey. Engage with Dr. Hammer and a global community […]
Explore the nuances and unique challenges faced by children with mild to moderate SCN8A impacts. Connect with other families on similar journeys, gain insights from research updates, and find resources tailored to this specific form of SCN8A. Engage with Dr. Hammer and a range of other families who are here to listen and support you. […]
Boston Children’s Hospital is now recruiting SCN2A & SCN8A patients for the PRAX-562 study. Please join us for a virtual session with Heather Olson, MD to: - Understand if your child is eligible for the trial - Hear about potential benefits of the this new treatment in development for SCN2A and SCN8A - Learn what […]
日本語で開催される、日本語話者のコミュニティ向けのSCN8Aネットワークに参加しましょう！人間の医学翻訳者のサポートを受けながら、Dr. Hammerに接続し、質問をし、最新の研究、治療オプション、およびコーピング戦略についての洞察を得ましょう。他の日本語を話す家族と交流し、経験を共有し、文化的および言語的ニーズに特別に適したリソースを見つけましょう。Dr. HammerおよびグローバルなSCN8Aコミュニティと接続することで包括性を体験しましょう。 Join our SCN8A network for the Japanese-speaking community held in Japanese! Connect with and ask questions of Dr. Hammer, gain insights into the latest research, treatment options, and coping strategies, facilitated by a human medical translator. Engage with other Japanese-speaking families, share experiences, and find resources uniquely suited to your cultural and […]
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.
