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Requesting Parent or Sibling Kits

The International SCN8A Alliance is pleased to be able to distribute both parent and sibling kits to families with a child with SCN8A epilepsy and related disorders. As a collaborator with UCB and 9 other patient advocacy groups, we are the authorized distributor for kits to all SCN8A families.

Families must be a members of the SCN8A community.

For updates on new programming, “Like” our public SCN8A Alliance Facebook page.

Kits are currently only available for shipping to families in the U.S.
Many of the contents are available for download HERE.

Parents & Caregivers Kit

Designed by the rare epilepsy community to help parents and caregivers support their VIP siblings.

VIP Sibling Kits

Available in two age-appropriate versions, these kits are designed especially for VIP siblings to help them cope and celebrate how important they are.

Access at your fingertips to all printed components of the Parents & Caregivers Kit, VIP Sibling Kits, and more!

SCN8A Alliance Order Form for VIP Kits

Parents/caregivers need to be members of the International SCN8A Alliance. You can sign up on the SCN8A Alliance Family Page or you can become a Family Partner by checking here.
Information on my child with SCN8A
We encourage parents to share a photo of their child receiving a sibling kit to share on our website (perhaps with their rare epilepsy sibling). We also welcome short messages from siblings sharing what they like about the kit, their personal thoughts on what it’s like having a sibling with SCN8A, or their advice to others on how they manage the challenges in their family. We want these siblings to know they are not alone and that many others like them also have families made special by a sibling with SCN8A, Send pictures and any notes along with your permission to post them to

Contact us if you have any questions at