STOP SJS

Living with SJS/TEN

Support Networks

SJS/TEN affects somewhere between one and nine people per million a year. Most survivors never meet another one by chance — which is exactly why these organisations exist.

The organisations below are run by and for people affected by SJS/TEN. They are independent of this program; we list them because survivors consistently point to them, not because we vet their advice. Anything clinical you read in a patient community is worth taking to your own care team.

Patient organisations

  • Stevens-Johnson Syndrome Foundation

    A US non-profit providing support and resources to patients and families affected by SJS/TEN, and the organisation most often named by survivors as a first point of contact.

  • SJS Awareness UK

    UK-based awareness and support charity. Useful whether or not you are in the UK — much of the practical material travels.

  • SJS Kids Support

    Aimed at families of children affected by SJS/TEN, where the questions and the timescales are different.

Rare disease support more broadly

Some of what is hardest after SJS/TEN is not specific to SJS/TEN: navigating disability claims, explaining an invisible condition, finding clinicians who have seen your diagnosis before. Rare disease organisations are set up for exactly those problems.