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 […]
Join us for our periodic conversation about inheritance in SCN8A. Dr. Hammer will share an update about what we are learning about inheritance in SCN8A and the you'll have the opportunity to speak with and hear from other families who have inherited cases of SCN8A in their family. The meeting will be available in more […]
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 […]
The International SCN8A Alliance will be in Orlando presenting about the work we are doing at the American Epilepsy Society meeting and holding key meetings with doctors, researchers and pharmaceutical companies to continue advocating to improve the understanding of and treatments for SCN8A. We would like to welcome you to an event we are hosting […]
Join our global English-speaking SCN8A community as we navigate the successes and challenges families face and tackle the science of SCN8A, facilitated by AI-assisted language translation. Get updates on research, connect with families across continents, and find resources tailored for a global audience.
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 […]
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 […]
Join our SCN8A network for live support and the latest research updates. Sponsored by the International SCN8A Alliance, you can talk directly with Dr. Hammer, both an SCN8A parent and the scientist who identified the SCN8A gene’s role in pediatric epilepsy. These sessions will help you understand the complex nature of SCN8A, and learn how […]
Sluit u aan bij ons SCN8A-netwerk voor de Nederlandssprekende gemeenschap, gehouden in het Nederlands! Maak verbinding en stel vragen aan Dr. Hammer, verkrijg inzichten in het nieuwste onderzoek, behandelingsmogelijkheden en coping-strategieën, gefaciliteerd door een menselijke medische vertaler. Ga in gesprek met andere Nederlandssprekende gezinnen, deel ervaringen en vind middelen die uniek zijn afgestemd op uw […]
Every year on International SCN8A Awareness Day, February 9th, we host a live event to celebrate where we've been over the previous year and where we're headed in the year(s) to come. With lots of mini-chats, we will discuss the State of SCN8A. Join us to hear from a lineup of doctors, researchers, caregivers, and […]
A dedicated gathering for families and caregivers of children facing the most comprehensively challenging forms of SCN8A. Share stories, seek support, and gain insights into treatments, research, and coping strategies tailored for those at the sharper end of the SCN8A spectrum. Connect with Dr. Hammer and a global community that understands and supports your journey. […]
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.
