UK Infantile Spasms Trust

The UK Infantile Spasms Trust (UKIST) is a registered charity and patient advocacy organization dedicated to supporting families affected by infantile spasms, a rare and severe form of childhood epilepsy. The trust focuses on raising awareness among both the public and healthcare professionals to facilitate early diagnosis, which is vital for improving long-term developmental outcomes. UKIST provides a range of services, including peer support, educational resources, and the 'GPs Behind the Spasms' awareness campaign. Additionally, the organization collaborates with medical professionals and funds research initiatives to advance the standard of care for children with West Syndrome. By working closely with the British Paediatric Neurology Association, UKIST helps to ensure that families receive timely and accurate information during a critical period of their child's development.