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Charting A Course For SCN8A Research

SCN8A advocacy groups working across borders to find solutions for SCN8A families.

Identifying Gaps In SCN8A Science

This inaugural Research Roadmap meeting will bring together SCN8A families, researchers, clinicians and pharmaceutical companies to develop a roadmap to prioritize the most critical SCN8A research to advance improved treatments and quality of life.

SCN8A Research Roadmap

This meeting of the minds will identify and prioritize research gaps in SCN8A, in order to facilitate more targeted progress in the field of SCN8A research. The workshop, a partnership with our SCN8A Global Leaders Alliance, provides a platform for stakeholders to collaborate on developing a comprehensive research roadmap that addresses the most critical gaps standing in the way of better care and treatments.  
The SCN8A Research Roadmap will define our path forward for research into SCN8A-related disorders. 

SCN8A Research Roadmap
SCN8A Gene Topology

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.

Family 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.

SCN8A Facebook Group
SCN8A Clinical Trials

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.

Consensus for the Diagnosis and Treatment of SCN8A

Addressing & Tackling Gaps in SCN8A Care and Treatment

In collaboration with leading pediatric neurologists and the SCN8A community, the International SCN8A Alliance initiated and led the FIRST-EVER global Consensus on the Diagnosis and Treatment of SCN8A-related disorders. Our findings emphasize the strength of collaborative wisdom, integrating cutting-edge research and vital insights from families living with SCN8A.

The Research Roadmap is an extension of this landmark Consensus as we work to address the many identified gaps in the science and work as a global community to systematically outline a plan to tackle the most signigicant roadblocks to progress in SCN8A.

 

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.

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