News
ITSAN 2021 “Spark” Virtual Patient Conference Agenda
May 15, 2021 11am – 3:30pm Eastern (US) Register here. Hope to see you there! Time Topic 11:00 - 11:15 Welcome to Spark 11:15 - 11:30 Introductions - ITSAN board 11:30 - 11:50 Dr. Olivia Friedman – Eastern Medicine and TSW 11:50 - 12:00 Q&A with Dr. Olivia Friedman 12:00 - 12:30 TSW Success Stories Panel - from our ITSAN community 12:30 - 12:50 Dr. Belinda Sheary - TSW 101 and Western Medicine 12:50 - 1:10 Break 1:10 - 1:40 Advocacy - with Jodie Ohr and Kelly Barta 1:40 - 2:00 Understanding the Mental Health Aspect of TSW – Professor Angela Tiru 2:00 - 2:10 Q&A with Angela Tiru 2:10 - 2:20 Guided Mindfulness Meditation 2:20 - 2:50 Breakout Session #1 (3 Options: Kids’ group, Men’s group, Women’s group) 2:50 - 3:20 Breakout Session #2 (3 Options: Caregivers for Kids, Caregivers [...]
First Quarter 2021 Newsletter
Welcome to ITSAN’s First Quarter 2021 Newsletter. Our community has grown significantly over the last few months; we count over 9k currently in ITSAN’s Private Facebook Support Group, over 3.7k followers on Instagram and have heard from TSW sufferers representing over 50 countries. ITSAN’s mission is to raise awareness of Topical Steroid Withdrawal Syndrome and to support affected individuals, caregivers and healthcare providers. Recent achievements in TSWS recognition and Thanks to: The British Association of Dermatologists and the National Eczema Society (UK) for highlighting critical issues about Topical Steroid Withdrawal Syndrome in a joint position statement. Read more here. The National Eczema Association for their informative article for individuals with eczema and their caregivers about Topical Steroid Withdrawal Syndrome -- written in collaboration with top doctors, ITSAN and the TSW community. Read the article here. Also, check out their new “TSW hub” with new information on [...]
Fall News & TSW Information
Hello ITSAN Community and #StayAtHome Experts!! Welcome to the ITSAN Fall Newsletter. Our community has grown significantly over the last 12 months; we count over 7500 people currently. ITSAN’s mission of the International Topical Steroid Awareness Network is to raise awareness of Topical Steroid Withdrawal Syndrome and support affected individuals. 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. Notice anything new on the ITSAN website? Kathryn Tullos, RN has been spearheading the effort to update research links, add a News section, and additional functionality into the site, which is getting around 11k visitors a month. To learn a little more about the ITSAN board working behind the scenes for the TSWS community, please visit the About ITSAN tab on ITSAN.org. And if ITSAN has helped you, please [...]
“More than Skin Deep” Voice of the Patient Report
The International Topical Steroid Awareness Network, along with four other nonprofits, is excited to launch the “More than Skin Deep” Voice of the Patient report! This report includes the lived experience of eczema, drawn from data and testimony shared at the 1st patient-focused drug development (PFDD) meeting for eczema. Check out this report and learn from hundreds patient and caregiver experts who shared their perspectives at the meeting, on the webcast, and via the survey. Host organizations, including our own Kelly Barta and Kathryn Tullos, and sponsor companies share how they’ll use the learnings from the More Than Skin Deep initiative to better meet the community’s needs. Download the report at bit.ly/eczema-report.
Alert: Patient-Focused Drug Development Meeting – September 23, 2019
ITSAN is so incredibly excited and proud to announce this very special event! For the past 8 months, we have been working tirelessly together with four nonprofit organizations serving the eczema community to launch “More Than Skin Deep” – a series of opportunities for your perspective to inform and shape the understanding of eczema and the development of drugs and medical devices designed to treat this condition. A focal point of the initiative is a patient-focused drug development (PFDD) meeting to be held September 23, 2019 in the Washington, D.C. area. It will provide the eczema community an opportunity to speak directly to Food and Drug Administration (FDA) staff, representatives of pharmaceutical and medical device companies, and other key stakeholders. The PFDD series began in 2013 as a way for FDA and clinical trial sponsors to understand more fully the burdens of living with a [...]
Special Announcement: New Documentary Film
It is with great honor that we can share a full-length documentary on Topical Steroid Withdrawal created by one of our community veterans, Briana Banos. A passionate TSW warrior, Briana raised the funds for this documentary via crowdfunding herself and managed full creative control of the film in order to raise awareness of the potential devastating effects of steroid medications on a global population. Please view the documentary and if you're so inclined, share, 'like,' and subscribe to her channel.