Alliance Public Family Discussion

Stay up to date on all Alliance and affiliates activities.

Get timely reports on new developments in research, registry data findings, and efforts to accelerate progress in SCN8A.

Share updates and informational questions with the community.

Contribute your reflections on maximizing family voice in SCN8A research, clinical care, and trials.

Alliance Private Family Sharing

Personal discussions our children’s condition, challenges, and successes.

Updates, questions, and discussion on the progress of the Clinician/Family Panel developing consensus treatment guidelines.

Reflections on current developments in the field.

Seeking or offering advice on shared issues of concern.

Occasional quick polls on topics emerging in our Research Consortium and Clinicians Network.

Share personal updates and questions with the community.

Contribute your reflections on challenges and opportunities to amplify family voice in SCN8A scientific developments.

Terms of Engagement

A recent study at NYU found that 77% of people said the most important group in their lives is primarily online.

To build and maintain these spaces as safe, supportive, and inclusive, it is important that families who participate in either the public or private pages agree to the Terms of Engagement outlined on each page. The terms basically define the culture of our online – and yet very personal and important – community. We are committed to being fully transparent about these terms and establishing accountability to nurture a safe, productive, and welcoming space for all.