Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) is an immunologically mediated and drug-induced disease that, although rare, has a high collective burden. SJS/TEN is well recognized as an acute life-threatening disease; however, the high short- and long-term morbidity and mortality are also a significant burden on patients, their families, and society. SJS/TEN is the most severe type of drug-induced diseases, comprised of skin necrosis, mucous membrane involvement, and ocular surface disease that leads to sight impairment.

Although multiple disciplines are involved in the research and care of SJS/TEN, provincial, national, and international coordination to maximize research efforts and networking has been challenging. On March 2, 2017, the first of such meetings, “SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science & Translation,” was held in conjunction with the American Academy of Dermatology meeting in Orlando, Florida. The meeting attracted 142 participants, including 30 trainees. It was successful in creating and coordinating research networks across disciplines that included the fields of dermatology, surgery, ophthalmology, urogynecology, immunology, genetics, pharmacology, regulatory science, and mental health. In addition, this meeting encouraged community and patient participation and forged durable links with SJS/TEN advocates, patients, and families affected by SJS/TEN. A white paper (White KD et al. J Allergy Clin Immunol Pract. 2018;6(1):38-69) published from this meeting highlights the opportunities for future collaborative research to fuel prevention, earlier diagnosis, and effective treatment and provides links to the oral presentations and presented posters at this meeting.

Building on the success of the 2017 meeting, the “SJS/TEN 2019: From Science to Translation” is a 1.5 day meeting that will be held April 26 and 27, 2019, in Vancouver, Canada, opening with a breakfast plenary at the Sheraton Wall Centre (the host hotel) and followed by a 1.5 day scientific program including trainee poster sessions at the BC Children’s Research Institute. This meeting will take place immediately before the Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO). It is anticipated that the 2019 meeting will attract up to 200 attendees including 40 trainees and, similar to the 2017 meeting, will encourage participation of new investigators, trainees, women, and minorities across multiple scientific and clinical disciplines. The meeting will feature local and international SJS/TEN survivors, their families, and local community advocacy groups. A special focus this year will be on long-term complications of SJS/TEN and SJS/TEN in minority populations. The program will include cutting-edge presentations, interactive discussions, and breakout sessions to identify key research priorities and future directions. The meeting and the trainee poster session will foster networking and mentorship through mentor-mentee pairing and career development.