Stevens Johnson Syndrome Foundation

09/28/2026

The future of SJS/TEN care should be shaped by the people who live with its impact. 💙

What do you believe patients need that is missing today?

✨ Earlier recognition and diagnosis
✨ Better education for patients and healthcare providers
✨ Faster access to specialized care
✨ Lifelong, multidisciplinary follow-up
✨ Greater attention to eye, skin, oral, and other long-term complications
✨ More research and clinical collaboration
✨ Patient voices included in treatment decisions

But this is only the beginning.

If you could change one thing about SJS/TEN care, what would it be?

👇 Finish the sentence:
“The future of SJS/TEN care should include…”

09/21/2026

SJS/TEN has been associated with prescription medications and over-the-counter (OTC) medications. While the risk varies greatly depending on the medication, it is important to remember that OTC does not automatically mean risk-free.

A reaction can occur after starting a medication, and for certain medications, changes in dose or exposure may also be clinically important.

⚠️ Know the medication. Know the risks. Know the warning signs.

When it comes to SJS/TEN, early recognition can save lives.

Educate Before You Medicate.

Learn more: SJSUPPORT.ORG

09/14/2026

Did you know that early awareness and education around Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) can save lives?

For 30 years, the SJS Foundation has been dedicated to advocating for survivors, supporting families, and furthering research. Your shared experience helps researchers better understand SJS/TEN and its long-term impact.

💙 Learn more about our mission and support resources at sjsupport.org, or fill out the SJS Registry today https://docs.google.com/forms/d/e/1FAIpQLSfC3kENVZQkLuhPjbv51PqmDYJESvBLKJ3zordWfNxWyAd1Rw/viewform?usp=send_form

09/11/2026

🇺🇸 SEPTEMBER 11 — WE WILL NEVER FORGET 🕊️

Today we honor the lives lost, the heroes who responded, and the strength of a nation that came together.

We remember the courage, sacrifice, compassion, and unity shown in the face of unimaginable tragedy.

May we continue to remember those we lost, honor those who served, and carry forward the spirit of unity that brought us together.

We will never forget. 🇺🇸💙

09/11/2026

⚠️ IMPORTANT: Beware of Facebook Impersonation Pages

We want to remind our SJS/TEN community to be careful when searching for or interacting with pages claiming to represent the Stevens–Johnson Syndrome Foundation.

🔵 Our official Stevens–Johnson Syndrome Foundation page has a BLUE VERIFIED CHECK MARK next to the page name. Please look for that verification mark.

The Stevens–Johnson Syndrome Foundation also has two additional official pages that are part of our organization:

💙 SJS Kids Support— created as a resource for children and families affected by SJS/TEN.

💙 Stevens Johnson Syndrome Grief Support — a dedicated space for those grieving the loss of a loved one to SJS/TEN. Our official website links to this bereavement support resource.

These are our legitimate affiliated pages.

Please be cautious of other pages or profiles using the Stevens–Johnson Syndrome Foundation name, logo, photographs, or other identifying information and presenting themselves as the Foundation.

🚨 If you are unsure whether a page or message is genuinely connected to us, please contact the Foundation directly before providing personal information or making a donation.

You can also visit our official website:
SJSUPPORT.ORG⁠

💙 Please share this post. Help us protect our SJS/TEN community from impersonation and misinformation.

Lighting the Way to Hope

09/07/2026

Happy Labor Day from the SJS Foundation! 💙

Today, we recognize and thank the hardworking people who keep our communities moving—healthcare workers, first responders, teachers, tradespeople, caregivers, and so many others.

Your dedication, compassion, and hard work make a difference every day. 💙

Wishing you and your loved ones a safe and happy Labor Day!

09/03/2026

Please keep Emefa in your prayers.

Please Help Us Stand With Emefa During This Critical Me… Lorna Richardson needs your support for Help Us Stand With Emefa During This Critical Medical Crisis

09/02/2026

❤️ HELP US BUILD THE SJS/TEN REGISTRY

Have you or someone you love experienced Stevens-Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TEN)?

We invite survivors, caregivers, and families who have lost loved ones to participate in the SJS Registry.

Your experience provides valuable information that can help researchers better understand SJS/TEN and its impact.

📝 JOIN THE SJS REGISTRY:
https://forms.gle/dFz9U9Atmr35panA8

Already completed the registry? Please submit it again. New research questions have been added, and your updated information is important.

🕊️ Lost someone you love to SJS/TEN? Their story matters. Their life mattered. Sharing their experience helps ensure they are remembered and included in what we learn.

❤️ Every experience adds to the registry. Every entry helps build knowledge.

Please consider participating today.

09/01/2026

💙 Goodbye August. Hello September! 💙

August may be over, but SJS awareness doesn’t end when the calendar changes.

For 30 years, we’ve continued to shine a light on Stevens-Johnson Syndrome—and we’re not stopping now. 🩵

Every story shared, every conversation started, and every person who learns about SJS helps keep awareness going all year long.

🔦 We continue to shine a light on SJS all year long.

Learn more, find resources, and stay connected: sjsupport.org

08/31/2026

💙 Finish the sentence…

SJS Awareness means ______ to me.

For some, it means survival.
For others, it means remembering someone they lost.
It can mean advocacy, education, support, healing, hope, or the fight for better research and understanding.

Whatever SJS awareness means to you, we want to hear it. 💙

👇 Finish the sentence in the comments:
“SJS Awareness means ______ to me.”

Your words could help someone else feel seen, understood, and less alone.