Uniting Families, Researchers, Clinicians & Biotech
With families at the center of all we do - 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]
Community Engagement
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:
Partnership & Innovation
We have built partnerships with all stakeholders since 2017 to accelerate innovation and progress in the SCN8A field. Our initiatives, including the global SCN8A Clinicians Network, the SCN8A Research Consortium, and the development of the global Consensus for the Diagnosis and Treatment of SCN8A-Related Disorders, underscore our commitment to advancing research and supporting the epilepsy community. Find out how these partnerships are driving change. [Link to Clinician Network, D&TC, Research Consortium, EAN
International SCN8A Registry
We established a dedicated SCN8A registry 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.
SCN8A Research
In partnership with the AES since 2014, we have provided funding to early investigators, many of whom have now become leaders in SCN8A research. This investment has catalyzed significant advancements in understanding and treating SCN8A epilepsy, showcasing the power of targeted research support. Explore the journeys of these researchers and their transformative work. [Link to old page on funded research/early investigators/ plus their testimonials]
SCN8A Scientific Meetings
Since 2014, we have hosted numerous meetings to foster coordination and collaboration among scientists and the broader SCN8A community. These pivotal gatherings have led to groundbreaking achievements, including the first-ever Consensus on SCN8A, the establishment of the first Gene Review, and the initiation of new collaborative efforts. Discover more about the impact of these meetings and the milestones achieved
