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! 🥳💜

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

🆕 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

#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

JointHealth™ express - Call for patient input on anifrolumab (Saphnelo®) for systemic #lupus erythematosus. Learn more: bit.ly/ACECDAPatien... #SLE #patientinput #ACEAdvocacy @arthritispower.bsky.social @lupuschat.bsky.social @fibroandlupus.bsky.social @schroeder-uhn.bsky.social

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

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

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

So excited about Dr. Daniel Whibley’s presentation at #ACR25 on Cognitive Dysfunction and how it Manifests in those living w/Fibromyalgia. He shared several ways to conduct baseline cognitive tests. cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat

Absolutely thrilled to catch this #ACR25 session on the Cognitive Function in Rheumatic Diseases. The first presentation was given by, patient advocate, Mary Alore sharing her experience with brain fog. Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat

Dr. Jillian Rose also shared some great analogies for what NOT talking about sex health is like! 🔸…it’s like treating half the disease. 🔸…is like measuring function without asking about QoL (quality of life) See images for reference ↴ #ACR25 cc: @ladaorg.bsky.social @lupuschat.bsky.social

Surprise @lupuschat.bsky.social spotting in Dr. Martha Delgado’s #ACR25 session! An FYI, #LupusChat gave a presentation at the NIH NIAMS annual clinical research event in both 2019 and 2024 on the importance of utilizing digital tools to build communities and advance health literacy. #LADAorg

Can’t get better than this start to your plenary: “Lupus nephritis is bad.” #ACR25

Up early at #ACR25 sitting in on sessions about sexual & reproductive health and rheumatic conditions. Sessions are being led by Dr. Lisa Sammaritano, Dr. Jillian Rose, and Patient Advocate extraordinaire, Monique Gore-Massy. #LADAorg #LupusChat

Patient experience researcher & advocate extraordinaire, Monique Gore-Massy gave a great presentation at #ACR25 on the importance of sexual health being an essential part of patient care! #LADAorg #LupusChat cc: @ladaorg.bsky.social @lupuschat.bsky.social

Dr. Jillian Rose is giving a remarkably informative presentation on Sexual Health & Rheumatic conditions. 🔹 90% of women w/SLE have reduced arousal 🔹56% of women w/Sjogren’s experience vaginal dryness 🔹89% of men w/Systemic Sclerosis experience erectile dysfunction #ACR25 #LADAorg #LupusChat

If you see me at #ACR25 ask me for a #LupusChat sticker!

Dr. Martha Delgado gave a great #ACR25 presentation focused on improving patient participation in clinical trials in Latino communities. She shared barriers for both patients & providers as well current efforts to remove barriers. cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat

Spending some time in the Poster Hall at #ACR25! I’m excited to see the results of several studies as well as the Patient Prospectives posters. #LADAorg #LupusChat @ladaorg.bsky.social @lupuschat.bsky.social

#LADAorg is appreciative of our strong partnerships with our patient advocacy colleagues at the #Lupus Community Booth #2121 at #ACR2025. Kudos for collaborating to improve lives! @lupuschat.bsky.social @michiganlupus.bsky.social @infusionaccessfoundation.org @infusioncenter.bsky.social

🆕 ACR 2025 Guidelines for Treatment of Systemic Lupus Erythematosus 🦋 #ACR25 #Lupus #RheumSky

Representing @lupuschat.bsky.social at the lupus community booth at #ACR25 with @ladaorg.bsky.social! Stay tuned as I share updates on new and intriguing studies on lupus and rheumatic conditions! Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25

We are excited to attend #ACR25 to network, learn and share our resources. Visit us at the #Lupus Community Booth # 2121. #PatientVoice @lupuschat.bsky.social @michiganlupus.bsky.social @infusionaccessfoundation.org @acr25.bsky.social @rheumepi.bsky.social @rheumcat.bsky.social #LADAorg

Hey #LupusChat fam, please join us is wishing our Founder & CEO @tiffanyandlupus.bsky.social a very Happy Birthday!!! We are forever grateful for all you do for the community. You are a beacon of light and we appreciate you. We hope you have THE BEST day! 🎉🎂

🎂💜 Happy Birthday to our colleague & #LupusChat co-host @syncenerdcarly.bsky.social! 🥳 Thank you for advancing lupus research & always showing up for the community. We celebrate you today & every day! 🎉

Got SLE? 💜 Been on a biologic? You could earn $150 for sharing your experience in a 90-min online lupus research interview! Ages 21–55, no Lupus Nephritis. Apply by TODAY Aug 8 👉 shorturl.at/GfJk5 #LupusChat

Please join us in celebrating all the wonderful Dads and Father figures in our community and across the world. Happy Father's Day to you all!! ~The #LupusChat Team 💜

Michael #Highlights #LupusGPT developed by @lupuseurope.bsky.social, a new AI tool aimed for patients, who just won the PFMD “Made with Patients” award. Congratulations! 🥳 Find it here: lupusgpt.org

✅ Meaningful patient collaboration X GenAI = real impact Congratulations to #LupusGPT on winning the #MadeWithPatients Award 🏆 at #EULAR25 🔊LISTEN IN 👇🏽 @lupuseurope.bsky.social @lupuschat.bsky.social @lupusdnadoc.bsky.social @lupuswarrior69.bsky.social @lupus.org @disorderlupus.bsky.social

We need crosssector collaborations, public-private partnerships and robust basic, clinical and translational projects to identify biomarkers, better clinical trial methodologies, prevent complications, develop better dx measures and safer, >effective #lupus drugs and cures. @lupuschat.bsky.social

Thrilled to have the opportunity to present our early research on identifying stereotypes for patients with SLE at #LUPUS2025 in Toronto. Leaving inspired and grateful for this outstanding community of scientists, clinicians, and patient partners.

Adding some of my favorite slides … #LUPUS2025 Many excellent sessions and abstracts, especially appreciated the multiple sessions on CNS lupus and cognitive impairment - an area of importance for patients with lupus.

A6: I'm more solo independent and don't rely on others very much. BUT I'm an expert at navigating the US medical beast that is Healthcare and insurance ;) #LupusChat

A5: oof... I dunno... Lupus kind of taught me that most of the people around me were lacking in any empathy. Being neurospicy I always had issues with relationships anyhow. 🙃 #LupusChat

While some drugs provide benefits to people with #lupus, significant side effects exist and can cause an increase in infections, cancer, significant bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. We need an arsenal of new drugs! @lupuschat.bsky.social

A4: I am a fierce advocate of myself. ❤️ #lupuschat

A6. So I decided to have ‪‪@tinarsjn.bsky.social‬ answer this. We've been friends for a gazillion years and have been roommates for a while lol. She says that living with someone who has lupus has shaped her interactions with people. #LupusChat

A6: #LupusTaughtMe to move through the world more intentionally. I plan ahead, protect my energy, and no longer feel guilty for resting. It’s also taught me how to pass my strength along—to use what I’ve learned to empower and uplift others on their journey too. #LupusChat

A6: #LupusMeEnseño para moverse por el mundo más intencionalmente. Planeo con anticipación, protejo mi energía, y no me siento culpable por descansar. También me enseñó cómo compartir mi fuerza y usar lo que he aprendido para empoderar y elevar a otros en su viaje. #LupusChat

A3: lupus has taught me to pay more attention to my body. Not to dismiss even small things that may pop up. #LupusChat

Disfrute del resto de su día & acuérdese de practicar el cuidado de sí mismo hoy porque además #LupusChat también es #SelfcareSunday!

Enjoy the rest of your day & remember to practice a little (or a lot) self-care today because besides #LupusChat it's also #SelfcareSunday!

Mantén viva la conversación usando la etiqueta #LupusMeEnseño para compartir tus experiencias personales, grandes o pequeñas. Tu historia podría ser la que alguien más necesita ver para sentirse menos solo o más comprendido. Cada voz ayuda a crear conciencia y comunidad. 💜#LupusChat

Keep the conversation going by using the #LupusTaughtMe hashtag to share your personal experiences, big or small. Your story might be the one someone else needs to see to feel less alone or more understood. Every voice helps build awareness and community. 💜#LupusChat

Thank you for sharing your stories, strength, and honesty in today’s #LupusTaughtMe discussion. Your voices help others feel seen, understood, and less alone on this journey. 💜 #LupusChat

Gracias por compartir sus historias, fortaleza y honestidad en la charla de hoy #LupusMeEnseño. Sus voces ayudan a otros a sentirse vistos, comprendidos y menos solos en este camino. 💜 #LupusChat

A5: El lupus me enseñó que las amistades reales no se desvanecen cuando las cosas se ponen difíciles. Los verdaderos se quedan, hacen preguntas y hacen espacio para mis límites. He aprendido que perder a personas que no respetan mi realidad no es realmente una pérdida. #LupusChat

A5: Lupus taught me that real friendships don’t fade when things get hard. The true ones stuck around, asked questions, and made space for my limits. And as for the “thank u, next” kind, I’ve learned that losing people who don’t respect my reality isn’t really a loss. #LupusChat

A5. I learned to discern who I can trust to understand how complicated my life is but still want to be here anyway. #LupusChat