Research
Donate to Research
SJS/TEN is rare, which means it competes badly for research funding against conditions affecting far more people. Small amounts of directed support go a long way here.
Organisations accepting donations now
- Stevens-Johnson Syndrome Foundation ↗
A US non-profit supporting patients and families affected by SJS/TEN, and funding awareness work. Verify current charitable status and how funds are used before giving, as you would with any organisation.
- NORD — National Organization for Rare Disorders ↗
Funds rare disease research and runs patient assistance programmes across many conditions, including severe cutaneous adverse reactions.
Contributions that are not money
For a condition this rare, information is genuinely scarce, and several of the most useful things you can give cost nothing:
- Correct our directory. If you work at a burn center or eye department listed on this site, confirming or correcting one entry improves it for everyone who searches after you. Tell us what we got wrong.
- Report your reaction. Drug safety labels change because adverse events get reported. See Advocacy for how.
- Take part in research. Registries and long-term follow-up studies are how the chronic phase of SJS/TEN came to be understood at all. See Clinical Trials.
- Point a clinician here. Many will manage one case in a career. A directory and a patient guide in their hands early changes outcomes.