About ITSAN

The International Topical Steroid Awareness Network is a nonprofit charity formed to raise awareness about a condition called Topical Steroid Withdrawal Syndrome, also known as Red Skin Syndrome or Topical Steroid Addiction.

ITSAN is the only 501(c)(3) non-profit charity serving the global TSW Syndrome community as a resource for the individual, the caregiver, and the healthcare provider. ITSAN has grown into a thriving world-wide online community where members comfort, share, and support one another.

ITSAN conducts outreach and member engagement through webinars, newsletters, social media, and moderated online support groups. We also participate in numerous national and international coalitions and advocacy initiatives to advance our mission.

Mission

To raise awareness of Topical Steroid Withdrawal Syndrome and support all affected individuals.

Goal

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

How ITSAN Advocates for the TSW Syndrome Community

Please visit the American Academy of Dermatology’s Patient Advocate Resource Center for more information about the partnership between members of the Coalition of Skin Diseases and the American Academy of Dermatology.

ITSAN board members and volunteers on September 23, 2019 at the More Than Skin Deep patient focused drug development meeting with the FDA near Washington, D.C. From left to right: Pam Friedman, Kelly Barta, Jodie Ohr, Rochelle Richter, Renata Feiner, Molly Evans, Jolene MacDonald, Kathryn Tullos

• One of five organizations to host “More Than Skin Deep” – the first patient-focused drug development (PFDD) initiative for the eczema community. Collaborated to produce “The Voice of the Patient” report
• Active in leadership with the Coalition of Skin Diseases (CSD)
• Lobbying in Washington, D.C. with the CSD at the Annual American Academy of Dermatology Association’s Legislative Conference
• One of three patient groups participating in the American Academy of Dermatology’s Inflammatory Skin Disease/Itch Measures Work Group
• Representing the TSW community at the International Alliance of Dermatology Patient Organizations (IADPO) Atopic Dermatitis symposium and advocacy events annually.
• Representing the ITSAN community at the American Academy of Dermatology Annual Meeting and Scientific Sessions
• Speaking at the Derma Care Access Network (DCAN) congressional briefing on step therapy
• Collaborating with Allergy and Asthma Network on their Corticosteroid Stewardship Campaign
• Presenting about TSW Syndrome at state and national meetings of the Dermatology Nurse Association

Looking ahead:

• Patient registry: In support of research efforts and making the first estimate of TSW Syndrome prevalence
• Physician registry: Connecting our patients with doctors who understand how to diagnose and treat TSW Syndrome is a top priority
• Petitioning the FDA for labeling changes to drug inserts for topical corticosteroids

Representatives from the Coalition of Skin Diseases at American Academy of Dermatology Association annual meeting, March 2019. ITSAN Board Member Kelly Barta, first row, fourth from left.