International SCN8A Alliance Logo

Empowering SCN8A Families

SCN8A Families

Information to Make Informed Decisions

Get caught up with the latest on care and treatment of someone with SCN8A. Discover
resources, connect with others, and be empowered to better advocate for your child.

Diagnosis & Treatment

In collaboration with leading pediatric neurologists and the SCN8A community, we are pioneered the FIRST-EVER glogl Consensus for the Diagnosis and Treatment of SCN8A-related disorders, innovative, tailored treatments. Our findings emphasize the strength of collaborative wisdom, integrating cutting-edge research and vital insights from families living with SCN8A.

SCN8A Family Support Meetings

SCN8A Family Meetings

Connect directly Dr. Michael Hammer, the geneticist who identified SCN8A as a cause of epilepsy, and SCN8A mom/advocate Gabi Conecker. Discuss your experiences and gain insights in sessions that offer real-time translation in multiple languages.

SCN8A Patient Registry

The registry is more than a collection of data, it’s a set of tools to help you better advocate for your child. Discover key findings, the impact of the data collected, and how you can contribute to this crucial research.

SCN8A Gene Topology
SCN8A Facebook Group

SCN8A Facebook Group

Find a community deeply rooted in our common cause. Join our Facebook group, open to both public and private members. Share stories, challenges, and questions with a community that includes regular contributions from Dr. Hammer.

Clinical Trials

Explore current Clinical Trials to see what new treatment opportunities exist and how they can benefit your family in the fight against SCN8A epilepsy.

SCN8A Clinical Trials

 

Global Research
Get informed about our Alliance’s Global Research Strategy. Understand our comprehensive efforts to drive faster development of improved treatments and outcomes for SCN8A-related epilepsy.

Access the Developmental and Epileptic Encephalopathy Project (DEE-P Connections). This resource offers webinars and carefully selected information on over 70 topics crucial for the care and treatment of severe DEEs.

SCN8A Family Volunteers
Find out how you can make a difference in accelerating the search for answers. Whether through volunteering, sharing your journey, or fundraising, your involvement supports vital research efforts.

Translate »