@lupuschat.bsky.social
#Lupus Community Our Chat: Sundays at 3 PM ET - 📌🗓️ Next #LupusChat is TBD at 3 PM ET. Moderated by: @tiffanyandlupus.bsky.social, @xtel007.bsky.social, @caringforlupus.bsky.social, @syncenerdcarly.bsky.social https://www.lupuschat.org
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