D.R.E.S.S. Syndrome Foundation @DRESSFoundation

SCAR 2026: Stronger Together is a wrap! What a powerful week sharing lived experiences of severe drug reactions alongside critical research on these diseases. Thank you to Vanderbilt University Medical Center, Michelle Martin-Pozo, PhD, April O'Connor, Dr. Elizabeth Phillips, and team for your efforts organizing and bringing us all together! We're grateful for the chance to share insights from our Register Your Case survey — self-reported data capturing the lived experiences of patients and their loved ones. And we especially want to thank the patient community members who joined us in person as panelists: - Meghan Garcia, mother of a pediatric DRESS survivor - Amy Emberly, DRESS survivor - Hayven Green, DRESS survivor They each shared the critical perspective of living with DRESS Syndrome, from the difficulty of getting a diagnosis to long-term health effects and the gaps in navigating this complicated disease. Their stories were powerful. Their presence even more so. Thank you for all you do to advocate for better treatment and deeper research. You and your voices matter. Another shout-out goes to the SJS/TEN patient community and our friends at Stevens-Johnson Syndrome Canada and SJS Awareness Oregon. It was powerful being in the same room together and learning from your lived experiences of a different yet similar severe drug reaction. And, a sincere thank you to every researcher and clinician working hard to better understand severe cutaneous adverse drug reactions (SCARs) and help patients. Your work is making a difference. Here are highlights from the meeting: - Dr. Dean Naisbitt offered an insightful framing of who's at risk — all of us carry HLA and T-cell receptors capable of engaging common culprit drugs, and TNF-α may play a role in who develops a reaction. - Dr. Roni Dodiuk-Gad stressed the social and mental health impacts on patients and how collaboration and recognizing what we don’t yet know is critical for improved care. - Dr. Annick Barbaud mapped the role of skin testing in informing drug causality and cross-reactivity in SCAR, including existing gaps and what consensus will require. - Dr. Saskia Oro made the case for higher-resolution evidence on systemic steroids as the staple treatment and outlined recommended next steps. - Anita Hanson introduced the "My SJS Passport" — a tool to support survivors after diagnosis, sparking discussion about a potential "My DRESS Passport." We look forward to seeing what develops. - Dr. Elizabeth Phillips shared critical updates on genetic testing and SCAR, including HLA prediction, current gaps, and pathways to deeper patient support. We continue to believe in a world where severe drug reactions are identifiable, treatable, and preventable. Meetings like this bring that vision one step closer.

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The global meeting on DRESS Syndrome and SJS/TEN is next week! Join us at SCAR 2026: Stronger Together in Nashville, TN, May 18 – 19, for a meaningful discussion about new research and insights on DRESS and severe adverse drug reactions. We’re excited to have representatives from our patient community joining us for a panel on the lived experience of DRESS Syndrome! Featuring: - Meghan Garcia, mother of pediatric DRESS survivor based in Arizona, US – triggered by: sulfasalazine - Amy Emberly, DRESS survivor based in Tennessee, US – triggered by: vancomycin - Hayven Green, DRESS survivor based in New York, US – triggered by: minocycline Registration is open until this Sunday, May 17. You can join in person or virtually. Save your seat! medsites.vumc.org/cdsi/scar-2026

🚨Primary Care Physicians 🚨 Join #DHS2026: Challenging Evidence 🧠💊 📍 Melbourne | 📅 23–25 Oct ✔️ Primary care–focused sessions ✔️ Practical skills and cases ✔️ Global experts + real-world insights Bring #drugallergy #antibioticallergy knowledge and care into your practice. 👉 dhs2026.org @RACGP #GPeducation #PrimaryCare #CPD @TheDohertyInst @EAACI_HQ

The DRESS & SJS/TEN communities are heading to Nashville this May! Join us at SCAR 2026: Stronger Together — a global meeting hosted by @VUMC, focused on severe drug hypersensitivity reactions. May 18–19 | Nashville, TN In-person + virtual 🔗 Registration: ow.ly/tazo50YJcXz #SCAR2026 #DRESSSyndrome #SJSTEN #DrugReactions

Announcing SCAR 2026: Stronger Together! The next global meeting on severe cutaneous adverse reactions (SCARs) is May 18 – 19, 2026, in Nashville, TN, USA. Attendees can join in-person or virtually. The event is hosted by Vanderbilt University Medical Center (VUMC) and will bring together medical-research and patient communities for discussion on SCARs, including DRESS Syndrome and SJS/TEN. We’re excited to host a panel along with Stevens-Johnson Syndrome Canada that will feature DRESS and SJS/TEN patients sharing their lived experiences with severe drug reactions. Interested to learn more? Sign up to receive more information and registration details from VUMC at the link below. Hope to see you there! Sign up: surveymonkey.com/r/SCAR2026

Join us for our next DRESS Support Meetup on March 11! In this session, we're recognizing "Big Wins in Small Steps." Surviving DRESS Syndrome requires careful attention to your recovery and health, and can feel draining, emotionally and physically. Within this space, small steps in recovery can create big gains in how people feel day to day and the hope they carry into tomorrow. Join us for an open discussion on the small steps that have made an impact in your recovery. Share your stories, ask questions, or simply listen. This space is yours! 💜 Topic: Big Wins in Small Steps When: March 11, 2026 Time: 6:30 pm to 7:45 pm ET Save your seat: ow.ly/BYt350YoHEj

Congratulations to our 2025 DRESS Heroes! 🌟 DRESS Hero is our annual awards event that celebrates medical professionals who excel at treating and caring for patients with DRESS Syndrome. Worldwide, patients and their loved ones nominated dermatologists, physicians, pharmacists, and other medical professionals who made a difference in their lives. We’re incredibly thankful for the thoughtful treatment and dedicated support each of our DRESS Heroes have provided patients. And we’re honored to recognize each of you as a DRESS Hero! Keep up the wonderful work! Introducing our 2025 DRESS Heroes: - Patricia Baidoo, PharmD - Rosanne St. Bernard, MD - Alexandria Dulchavsky, MD - Eric J. Feit, MD, FAAD - Muhammad Hasan, MBBS, FCPS, MRCP, FRCPath - Brenna LaBere, MD - Charles E. Mount, MD, FAAD - Eliza Notaro, MD - Yuktanand Singh, MD, FAAP - Shivam Zaver, MD, PhD - Mayar Zawawi, MD Learn more and read their patient testimonials: ow.ly/15Kf50Yfi7l

For people with DRESS Syndrome, having a medical ID can become a critical tool that helps protect them during a medical crisis. This wearable advocate provides medical teams with essential life-saving information about your health and helps them navigate safe treatment. And it can often be the first item emergency responders look for on people during a medical event. Learn more about the benefits of medical IDs in our newest blog! ow.ly/mVFU50YbLE9

A friendly reminder that our next DRESS Support Meetup is today! We welcome DRESS Syndrome patients, loved ones, and caregivers to join us. The topic is Unwind and Connect. We'll host an open discussion where you can share stories and challenges you've had, and ask questions. Or, you can simply listen and be with a community of people who understand what you're going through. This space is yours. All are welcome! Topic: Unwind and Connect, an open discussion When: January 14 Time: 6:30 pm to 7:45 pm ET Register today by 12 pm ET: ow.ly/jGH750XWIP7

Want to connect with our DRESS Syndrome patients, loved ones, and caregivers? Our next DRESS Support Meetup is this Wednesday, Jan. 14! In this week's Meetup, we're holding space for you to unwind from the holiday season and connect with community. We’ll talk about what has felt challenging recently and share support as we look toward the year ahead. All are welcome! 💜 DRESS Support Meetup - Date: January 14 - Time: 6:30 pm to 7:45 pm Join us: ow.ly/ye6Z50XVHr2

New or worsening rashes after starting a medication should never be ignored. At the 2025 Dermatology Days of Paris conference, Dr. Camille Hua highlighted DRESS Syndrome as a dermatologic emergency requiring rapid recognition and care. 🔗 ow.ly/hfyK50XUE7f #DRESSsyndrome #DrugRash

Our next DRESS Support Meetup is January 14! The holiday season can be difficult for many people living with or recovering from an illness like DRESS Syndrome. Between ongoing symptoms, emotional strain, and the energy it takes to get through each day, this time of year can feel overwhelming. In our next Meetup, we're holding space for you to unwind from the season and connect with community. We’ll talk about what has felt challenging recently and share support as we look toward the year ahead. All are welcome! 💜 Join us: ow.ly/w79t50XMA9p

Wishing you a warm and loving holiday season! Thank you for being part of our community. May the holidays bring you full hearts and peaceful days surrounded by those you love. 💜

We’re happy to announce that we’ve named our 2025 DRESS Heroes! 🌟 Thank you to everyone who nominated a medical professional who supported them or a loved one with expert DRESS treatment and care. Nominations came from around the world, including the US, Canada, and the UK. We’ve named 11 medical experts as DRESS Heroes who are hematologists, dermatologists, pediatricians, and more. We’ll be making our formal announcement with all DRESS Heroes in January 2026. In the meantime, our 2026 DRESS Hero Awards are open! Nominate your DRESS Hero today: ow.ly/wLik50XMACm

For many people with DRESS Syndrome, taking prednisone is a vital tool for overcoming the acute, life-threatening stage of the disease. However, this treatment also comes with its challenges. Many people can experience unexpected physical and emotional side effects that they are never warned about. Such was the case for DRESS Syndrome survivor Christina Ledford, BSN, RN. In her next guest blog, Christina breaks down the silence surrounding prednisone and its impact on patients, physically and mentally. Read her story: ow.ly/cn5R50XIuPO

Thank you! 🫶 Because of your generosity, we’ve raised $14,330.00 so far — helping patients worldwide navigate and survive DRESS Syndrome. In 2025, 2,191 cases of DRESS have already been reported to the FDA (FAERS). And an estimated 7,000 people in the U.S. are suffering from DRESS at any given time. These aren’t just numbers. They are people who are: • waiting for a diagnosis • experiencing organ failure • navigating long-term complications • fighting to survive Your support helps ensure more patients receive a timely diagnosis, appropriate care, and life-saving guidance — and that no one faces DRESS alone. Thank you for supporting the DRESS Syndrome Foundation. We couldn’t do this work without you. 💜🌟 Donate: donorbox.org/giving-tuesday…

Your donation enables us to attend major medical conferences and host educational webinars on DRESS — ensuring patients have a voice and clinicians stay informed. 💜 For Katherine, access to trusted education helped her have the right conversations with her medical team — leading to better recognition and care. “Thank you for the work you do to connect us, inform us, and empower us to educate loved ones and even medical providers.” Your support strengthens essential DRESS education for both patients and clinicians. Donate: ow.ly/JJTE50XAnCC

Your donation … Helps make the 2026 Global SCARs Meeting possible. This conference is a rare and essential opportunity for experts and patients to advance research, awareness, and treatment for life-threatening drug reactions. 💜 For Amber, having our support enabled her to deepen her medical care. To this goal, convening global leaders in severe drug reactions is a critical pathway to better diagnosis, treatment, and survival for patients like her. "Thank you again for all of your help. This is the most care I have received since all of this happened.” Amber D. Your support helps improve medical awareness of DRESS Syndrome. Donate today: ow.ly/tcUU50XAnxP

Shop with a cause this GivingTuesday! In honor of this giving holiday, fine clothing store Verdalina is donating 20% of all sales — both in-person and online — to our Foundation! They will also match what they raise. Based in Richmond, Virginia, Verdalina focuses on slow fashion, prioritizing quality through fair trade, organic, and environmentally responsible materials, and is sweat-shop free. You can know you’re buying from a company that is deliberate and caring. We’re honored that Verdalina Founder Deborah Boschen chose our Foundation as a cause to support! Explore their store and support our mission of advocacy, education, and support for DRESS Syndrome patients and their families. verdalina.com