#LupusChat
@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
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
Reposted by #LupusChat
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
#LADAorg #LupudChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social
October 28, 2025 at 5:52 PM
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
#LADAorg #LupudChat
cc: @ladaorg.bsky.social @lupuschat.bsky.social
Reposted by #LupusChat
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
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
October 28, 2025 at 3:40 PM
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
cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Reposted by #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
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
October 28, 2025 at 3:18 PM
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
Cc: @ladaorg.bsky.social @lupuschat.bsky.social #LADAorg #LupusChat
Reposted by #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
🔸…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
October 28, 2025 at 3:01 PM
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
🔸…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
Reposted by #LupusChat
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
October 27, 2025 at 8:01 PM
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
Reposted by #LupusChat
October 27, 2025 at 1:31 PM
Reposted by #LupusChat
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
October 27, 2025 at 2:04 PM
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
Reposted by #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
cc: @ladaorg.bsky.social @lupuschat.bsky.social
October 27, 2025 at 3:10 PM
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
cc: @ladaorg.bsky.social @lupuschat.bsky.social
Reposted by #LupusChat
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
🔹 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
October 27, 2025 at 2:21 PM
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
🔹 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
Reposted by #LupusChat
If you see me at #ACR25 ask me for a #LupusChat sticker!
October 27, 2025 at 6:22 PM
If you see me at #ACR25 ask me for a #LupusChat sticker!
Reposted by #LupusChat
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
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
October 27, 2025 at 6:42 PM
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
cc: @ladaorg.bsky.social #LADAorg @lupuschat.bsky.social #LupusChat
Reposted by #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 #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
October 26, 2025 at 6:36 PM
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 #LupusChat
@ladaorg.bsky.social
@lupuschat.bsky.social
Reposted by #LupusChat
#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
October 27, 2025 at 5:05 AM
#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
Reposted by #LupusChat
October 26, 2025 at 2:56 PM
Reposted by #LupusChat
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
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
October 26, 2025 at 5:19 PM
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
Please visit our community booth in the Exhibit Hall at booth 2121! #LADAorg #LupusChat #ACR25
Reposted by #LupusChat
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
@lupuschat.bsky.social @michiganlupus.bsky.social @infusionaccessfoundation.org @acr25.bsky.social @rheumepi.bsky.social @rheumcat.bsky.social
#LADAorg
October 21, 2025 at 2:15 AM
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
@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! 🎉🎂
August 28, 2025 at 2:15 PM
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! 🎉
a cartoon character from bob 's burgers is celebrating her birthday with her hands on her head .
Alt: a cartoon character from bob 's burgers is celebrating her birthday with her hands on her head .
media.tenor.com
August 25, 2025 at 4:26 PM
🎂💜 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
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
August 4, 2025 at 7:12 PM
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
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 💜
~The #LupusChat Team 💜
June 15, 2025 at 8:31 PM
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 💜
~The #LupusChat Team 💜
Reposted by #LupusChat
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
Find it here: lupusgpt.org
June 14, 2025 at 11:49 AM
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
Find it here: lupusgpt.org
Reposted by #LupusChat
✅ 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
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’re thrilled to announce that hashtag
#LupusGPT has won the #MadeWithPatients Award 2025!
🌍A huge moment for Lupus Europe & the #lupus community —proving what’s possible through true patient collaboration.
Celebrating at #EULAR2025! Come join us at booth O15!
#LupusGPT has won the #MadeWithPatients Award 2025!
🌍A huge moment for Lupus Europe & the #lupus community —proving what’s possible through true patient collaboration.
Celebrating at #EULAR2025! Come join us at booth O15!
June 14, 2025 at 11:35 AM
✅ 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
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
Reposted by #LupusChat
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
May 31, 2025 at 5:35 AM
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
Reposted by #LupusChat
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.
May 26, 2025 at 5:04 PM
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.