iiinova — where your digital self keeps evolving

#LupusChat @lupuschat.bsky.social · 31/07/2026

That’s a wrap! Two days of dynamic data and lively discussions around Accelerating Product Development for Pediatric Systemic Lupus Erythematosus (SLE). We are hopeful that this can lead to advancement and approval of more treatments for youth with Lupus.💜 #LupusChat #LADAOrg @ladaorg.bsky.social

021

#LupusChat @lupuschat.bsky.social · 30/07/2026

Patients and Care Partners, McKenna Bowes, Chloe Raymond, Nis Cooper, Elizabeth SantaCruz, and Miah Andrade for the final patient panel of the day Patient/Family Panel: Risk Tolerance and Enrollment in Clinical Trials moderated by Dr. Stacy Ardoin #LupusChat #LADAorg @ladaorg.bsky.social

A screenshot of a projected slide. The slide is about the Patient Family Panel & it’s moderated by Stacy Ardoin. Elizabeth and Miah are featured panelists.

012

#LupusChat @lupuschat.bsky.social · 30/07/2026

Dr. Hermine Brunner shared Lessons Learned from Conducting Clinical Trials in Pediatric SLE. Dr. Brunner discussed how trials have been delayed due to restrictive eligibility criteria and recruitment/enrollment difficulty. #LupusChat #LADAorg @ladaorg.bsky.social

012

#LupusChat @lupuschat.bsky.social · 30/07/2026

Hey #LupusChat fam! We’re onsite today at the @fda.gov UMBaltimore CERSI Public Workshop: Accelerating Product Development for Ped SLE. Co-hosts @caringforlupus.bsky.social (and Patient Advocate Miah A.) and @syncenerdcarly.bsky.social are in the building to listen, learn, and share experiences.

021

#LupusChat @lupuschat.bsky.social · 06/06/2026

🎉 Hey #LupusChat fam, join us in wishing our Co-host and sister in advocacy @xtel007.bsky.social a very Happy Birthday! We appreciate your dedication and continued work for the community. We hope your day is as spectacular as you are! 🎂🎈

110

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 31/05/2026

We need innovative research that includes cross-sector collaborations and public-private partnerships, identifies causes, biomarkers, better trial methodologies, diagnostic measures and treatments, prevents complications, and eradicates #lupus. #LupusAwarenessMonth @lupuschat.bsky.social

011

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 27/05/2026

#Lupus typically begins during critical years for education and career advancement, lupus profoundly disrupts working lives. We need better diagnostic tools and treatments so that we can achieve our life goals! #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social

021

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 25/05/2026

Classification criteria are used to define #lupus research study populations due to lack of specific #biomarkers resulting in combining heterogeneous patients with various disease manifestations and pathophysiologies and pathogenesis into one group. #LupusAwarenessMonth @lupuschat.bsky.social

021

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 26/05/2026

While some drugs do benefit people with #lupus, significant side effect profiles exist and can cause increases in infections, cancer, bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social

021

Reposted by #LupusChat

NKF Nephrology Professionals @nkf-professionals.bsky.social · 24/05/2026

What does a congressional hearing on kidney health mean for clinical practice? Hear directly from Dr. Suzanne Watnick, who testified, plus insights from Dr. Dan Weiner. 🎧 Tune in: bit.ly/3DamjQ9 (Episode 054) #CKD #Nephrology #Healthcare

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 23/05/2026

#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth @lupuschat.bsky.social @michiganlupus.bsky.social

053

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 22/05/2026

Although #lupus is more severe and more prevalent in non-white populations, recruitment of minority patients to participate in clinical trials has proven to be particularly challenging. #lupusawarenessmonth #lupusawareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

022

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 21/05/2026

Women of color tend to develop #lupus at a younger age, experience more serious complications and have higher mortality rates—up to 3 times the incidence and mortality of Caucasians. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

031

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 20/05/2026

Clinical trials aren’t designed to measure outcomes which are most important to those with #lupus such as mitigating fatigue, daily health-related qol, reduction in current drug regimen, steroid-sparing, side effect tolerability, and comorbid conditions. #LupusAwareness @lupuschat.bsky.social

011

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 19/05/2026

#Lupus disproportionately affects women of color in the United States; it is 2 to 3 times more common among African-Americans, Hispanics and Latinos, Asians, and Native Americans. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

021

Reposted by #LupusChat

Michelle @elleonsound.bsky.social · 18/05/2026

#LupusTaughtMe to adapt. I focus on what I can do instead of what I can't do. And there are always accomodations or modifications I can find for many things. I also listen to my body more. #LupusChat

041

#LupusChat @lupuschat.bsky.social · 17/05/2026

This #LupusAwarenessMonth, we’re sharing the lessons it’s taught us. Lupus changes your life in ways most people don’t see. 💜 Finish the sentence: #LupusTaughtMe… Reply below + include #LupusChat so others can find your story. ✨

120

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 16/05/2026

Some drugs used to treat #lupus are approved for other indications such as chemotherapies, used to treat cancer, and immunosuppressants, used post organ transplantation. Some are known to be teratogenic (causing birth defects) and often compromise fertility in men and women. @lupuschat.bsky.social

021

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 17/05/2026

There are significant challenges in creating a uniform control group in #lupus clinical trials because of the variety of background and concomitant medications—usually immunosuppressants. #LupusAwarenessMonth #autoimmune @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social

021

#LupusChat @lupuschat.bsky.social · 10/05/2026

Hoy es #DiaMundialDelLupus! 💜🌍 El lupus es una enfermedad autoinmune crónica que puede afectar a cualquier órgano. Los síntomas pueden cambiar a diario, el diagnóstico puede tardar años e incluso la luz solar puede desencadenar brotes. Ayuda a difundir la conciencia #LupusChat

010

#LupusChat @lupuschat.bsky.social · 10/05/2026

Today is #WorldLupusDay! 💜🌍 Lupus is a chronic autoimmune disease that can affect any organ, not just joints. Symptoms can shift daily, diagnosis can take years, and even sunlight can trigger flares. Help spread awareness: share this post 💜 #LupusChat

064

#LupusChat @lupuschat.bsky.social · 10/05/2026

Feliz Día de la Madre de #LupusChat 💜🌸 Hoy honramos todas las formas de maternidad. Madres viviendo con lupus, madres criando a un hijo con lupus, madrastras, madres elegidas, mujeres que querían hijos pero no pudieron, Te vemos 💐💜✨

010

#LupusChat @lupuschat.bsky.social · 10/05/2026

Happy Mother’s Day from #LupusChat 💜🌸 Today we honor all forms of mothering. Moms living w/ lupus, moms raising a child w/ lupus, stepmoms, chosen moms, women who wanted children but couldn’t, moms grieving loss, & eldest daughters who had to mother siblings. We see you 💐💜✨

032

Reposted by #LupusChat

Dalila @dalilatm.bsky.social · 10/05/2026

Today! #WorldLupusDay 🤩🦋 Excited about all the global awareness and looking forward to seeing Cardiff Castle lit up purple! 🏰🏴󠁧󠁢󠁷󠁬󠁳󠁿💡#Wales #Lupus

022

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 09/05/2026

Help us celebrate #WorldLupusDay on Sunday by joining us in our #HatsOn4Lupus campaign to promote global #LupusAwareness. Just put on a hat and take a photo and post or send to us @caringforlupus.bsky.social @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

011

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 05/05/2026

#Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is highly individualized, extremely volatile, debilitating, life-diminishing, and potentially fatal. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social

033

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 08/05/2026

By the most conservative estimates, there are at least 322,000 Americans with definite or probable #lupus. Recent independent surveys have suggested a prevalence as high as 1.5 million. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social

031

Reposted by #LupusChat

#LupusChat @lupuschat.bsky.social · 03/05/2026

May is #LupusAwarenessMonth, and your voice matters. 💜 Lupus is different for everyone & the world needs to understand that. Share your lived experience using #LupusFeelsLike and #LupusChat to help others feel less alone and bring visibility to the realities of this disease.

084

Reposted by #LupusChat

Tiffany @tiffanyandlupus.bsky.social · 03/05/2026

Sometimes #LupusFeelsLike slow internet, like my brain is buffering. I’ll be awake but my mind is stuck in sleep mode. Words will escape me. I’ll forget why I walked into a room. Did I even take my meds today? The information will be in my head but I’m unable to access it 😭 #LupusChat 🧠

media.tenor.com

a black and white drawing of a brain with a loading sign on it .

Alt: a black and white drawing of a brain with a loading sign on it .

021

Reposted by #LupusChat

💜⚽🇭🇹♊ Xtel Bond @xtel007.bsky.social · 03/05/2026

#LupusFeelsLike a second full time job, honestly. #LupusChat

001

Reposted by #LupusChat

Deebo Gilbert-Wayne✨ @tinarose0103.bsky.social · 03/05/2026

#LupusFeelsLike That sound from Trolls “hahahaha! Again!!” 🫩

042

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 07/05/2026

Only five treatments are approved for #lupus (aspirin, corticosteroids, hydroxychloroquine, belimumab, and anifrolumab-fnia) and three drugs for lupus nephritis (belimumab, voclosporin and obinutuzumab). #autoimmune @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

022

#LupusChat @lupuschat.bsky.social · 03/05/2026

Este mayo es el #MesDelLupus 💜 Comparte tu experiencia viviendo con lupus usando #LupusSeSienteComo + #LupusChat. Hagamos visible cómo es realmente vivir con lupus.

041

#LupusChat @lupuschat.bsky.social · 03/05/2026

084

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 03/05/2026

#Lupus clinical research has been problematic due to the lack of basic understanding of the disease, reliable biomarkers, and uniform control groups, as well as clinical outcome measure limitations and the heterogeneity of the patient population. #lupusawareness #autoimmune @lupuschat.bsky.social

001

#LupusChat @lupuschat.bsky.social · 02/05/2026

💜 May is Lupus Awareness Month! Lupus is a autoimmune disease that can impact the entire body & it’s often invisible. This month we encourage you all to help spread awareness, amplify patient voices, & advocate for better diagnosis, treatment, and support for those living w/ lupus. #LupusChat 💜

062

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 01/05/2026

Lupus is an extremely complex chronic inflammatory autoimmune disease where a triggering agent causes the immune system to dysregulate and attack the patient affecting any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood & blood vessels. @lupuschat.bsky.social

044

#LupusChat @lupuschat.bsky.social · 20/04/2026

Hey #LupusChat community! Join the livestream happening NOW as @lupus.org kicks off The National #LupusAdvocacy Summit! 🌐: www.youtube.com/live/E0Q8rxM...

youtube.com

2026 Lupus Foundation of America Summit Livestream

YouTube video by Lupus Foundation of America

054

#LupusChat @lupuschat.bsky.social · 06/01/2026

Hey everyone, please join us in wishing our amazing friend, fierce advocate, and awesome #LupusChat Co-host, @caringforlupus.bsky.social a Happy Birthday! Thank Liz you for all your hard work. It is an honor to advocate alongside you. We love you and hope you have the best day and year! 🥳💜

Carly, Liz, Tiffany, Christèle. They are all wearing LupuChat shirts and purple scarves.

Dr Knight, Christèle, Li, Miah, attending the 2025 LRA gala.

Miah and Liz, speaking at 2024 ACR conference.

031

#LupusChat @lupuschat.bsky.social · 01/01/2026

Happy New Year #LupusChat family! We're another year stronger & we're looking forward to thriving together with each of you in 2026! 🥳💜

051

Reposted by #LupusChat

Mithu Maheswaranathan, MD @mithurheum.bsky.social · 05/11/2025

🆕 2025 ACR Guideline for Treatment of Systemic #Lupus Erythematosus 🦋 Just Released: Nov 3 #ACR25 🔥 🔸Review organ-specific treatment recommendations 🔸Steroid & HCQ Use Guidance 🔸Management of Comorbidities ➠ Read the Full Guideline here: acr.tw/47mkegj #RheumSky #SLE #Rheumatology

296

Reposted by #LupusChat

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 25/11/2025

#LADAorg is honored to sponsor a table at the LRA Gala to recognize people with #lupus for their grace, dignity and courage while supporting #lupusresearch. @lupuschat.bsky.social @annezab.bsky.social @caringforlupus.bsky.social @masonicresearch.bsky.social @lupusresearch.bsky.social

061

#LupusChat @lupuschat.bsky.social · 25/12/2025

Happy Holidays to everyone in the #LupusChat family! We wish you nothing but peace, love, and happiness. Remember to take some time for self-care. We love you all! 💜 🎄📯☃❄⛄ ~ The #LupusChat Team

media.tenor.com

a purple christmas card with purple ornaments and the words happy holidays .

ALT: a purple christmas card with purple ornaments and the words happy holidays .

000

Reposted by #LupusChat

Donald Thomas, MD @lupusencyclopedia.bsky.social · 28/10/2025

Meeting with like-minded people to improve lives of patients at @ACRheum #ACR25 is wonderful #Sjogrens #lupus #SLE

0102

Reposted by #LupusChat

Tiffany @tiffanyandlupus.bsky.social · 28/10/2025

Absolutely adore @ireneblanco.bsky.social, such an amazing person and one of my favorite rheumatologists. Thank you for stopping by & bringing your mentee who also happens to be my old rheumy by the lupus community booth at #ACR25! #LADAorg #LupudChat cc: @ladaorg.bsky.social @lupuschat.bsky.social

093