Uniting Families, Researchers, Clinicians, & Pharma
At the center of SCN8A research - working to advance the pace of SCN8A science.
SCN8A Research Roadmap
Advancing collaboration on research priorities and setting the pace for progress in of SCN8A science. The research roadmap targets improving treatments and outcomes for individuals affected by SCN8A. Learn about our plans and how you can contribute to this vital work.
SCN8A Registry Data
Established in 2015, which has since become an essential resource for longitudinal data on the disorder’s natural history. This ongoing effort has produced vital insights, contributing to improved treatments and patient care through shared findings with families and publication in peer-reviewed articles. Learn more about the registry’s impact and access its resources.
Global Leaders Alliance
An initiative to synchronize efforts in education, resources, data collection, and maintain a unified global research strategy. This alliance is instrumental in coordinating global efforts to tackle SCN8A epilepsy. Discover how global leaders are making a difference. [Link to page on Global Leaders]
Join our weekly meetings that promote bi-directional learning, connecting researchers and families in meaningful dialogue.
- SCN8A Family Support Meetings
- Citizen-Scientist Meetings
Join our next session and be part of the conversation. [Link to pages on Family meetings, Unraveled]
We unite families, researchers, clinicians, pharmaceutical companies, and government to confront this devastating disorder through targeted global collaborations - with children and families always at the CENTER of everything we do. The International SCN8A Alliance has worked tirelessly over the past decade to address the urgent need for improved care and outcomes. Working through these partnerships, we've laid the foundation for scientific progress. The key elements include the follow 7 building blocks: