Prevention, early detection, accurate diagnosis, and proper treatment of Topical Steroid Withdrawal

Goal One: Patient registry: In support of research efforts and making the first estimate of TSW Syndrome prevalence, as well as diagnostic criteria and healing timeline

Goal Two: Petitioning the FDA for labeling changes to drug inserts for topical corticosteroids

Goal Three: Physician registry: Connecting our patients with doctors who understand how to diagnose and treat TSW Syndrome is a top priority

- Meeting one on one during onboarding with new board members - Meeting as a group weekly, rather than just our quarterly board meetings, handling situations professionally, representing ITSAN - Board retreat annually to discuss goals, delegate/follow-up

ITSAN has dealt with external changes in the last year by meeting more often internally, meeting more often with our community members, hosting surveys, traveling to conferences to stay up to date, and by joining professional organizations that can help forward our mission. We hold quarterly formal board meetings, and now hold weekly informal meetings with the board. It helps keep us on the same page and moving toward our goals. We also started monthly, mediated support groups via Zoom to provide outreach to our community and keep them up to date on what ITSAN is doing now. We also try to listen to what they need, what information they need, what type of messaging feels validating or offensive. The patient perspective is paramount, and we have taken these measures to make sure their needs are met and voices are heard. This year has brought live conferences and travel back to our organization. We have made sure to attend as many as we can afford to stay connected and relevant within the medical community. We are still trying to raise awareness of TSW Syndrome, an emerging condition, and networking within the medical community is important to us. We have to represent the patient experience to the medical community. We have collaborated with other patient centered organizations to run surveys and publish in the literature to make certain the patient voice is heard in the medical community. This is a huge shift and a first for us -- being published in the literature and contributing in this way has been a goal for so long. In that vein, we joined NORD - National Organization for Rare Disorders to create a patient registry that will collect the patient experience for up to 10 years. We have had to pay contractors and fundraising has become more necessary and we are in the transition from a 100% volunteer model to being able to contract work and eventually hire employees. It has stretched us all to capacity, but we have so much hope for the future.