Raising awareness, supporting families, offering hope.


ukist photo reg charity

Welcome to the UK Infantile Spasms Trust. The UK Infantile Spasms Trust has been newly established in 2017 by a group of families with children affected by infantile spasms.

This site was set up by a group of UK parents who found each other through one of the international IS support groups. Prior to 2016 there was no Infantile Spasms support network in the UK. We started as a Facebook group, and found like-minded parents who were passionate about raising awareness of IS and supporting other families. UKIST became a registered charity in March 2017. We hope you find the information on the site helpful.

Registered charity (no 1172167)

This video was made by UKIST to demonstrate how subtle infantile spasms can be. We would be grateful if visitors to the site would share this video to raise awareness. Early recognition, diagnosis and treatment of infantile spasms are critical to improving outcomes.