Lupus and Allied Diseases Association, Inc.'s Avatar

Lupus and Allied Diseases Association, Inc.

@ladaorg.bsky.social

Improving access to care and quality of life by wielding the patient and care partner voice as a catalyst to advance advocacy, education, awareness and research efforts.

95 Followers  |  145 Following  |  86 Posts  |  Joined: 09.12.2024  |  2.2232

Latest posts by ladaorg.bsky.social on Bluesky

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Kudos to @whitneywarriors for doing an amazing job presenting at the #ACR25 #PatientPerspective session. By sharing her own challenges and solutions is key to advancing better care. #LADAorg #PatientVoice
@lupuschat.bsky.social @michiganlupus.bsky.social @masonicresearch.bsky.social

30.10.2025 19:56 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

28.10.2025 17:52 β€” πŸ‘ 9    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
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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

28.10.2025 15:40 β€” πŸ‘ 8    πŸ” 6    πŸ’¬ 0    πŸ“Œ 0
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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

28.10.2025 15:18 β€” πŸ‘ 12    πŸ” 5    πŸ’¬ 0    πŸ“Œ 0
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Dr. Jillian Rose also shared some great analogies for what NOT talking about sex health is like!

πŸ”Έβ€¦it’s like treating half the disease.
πŸ”Έβ€¦is like measuring function without asking about QoL (quality of life)

See images for reference ↴ #ACR25

cc: @ladaorg.bsky.social @lupuschat.bsky.social

28.10.2025 15:01 β€” πŸ‘ 6    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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Learning a lot in an #ACR25 session led by @ireneblanco.bsky.social & hearing Patient Advocate, Grayson Schultz speak on the many barriers LGBTQIA+ individuals face while trying to access healthcare & how to navigate rheumatology care as an LGBTQIA+ patient. #LADAorg #LupusChat @ladaorg.bsky.social

27.10.2025 20:12 β€” πŸ‘ 7    πŸ” 3    πŸ’¬ 1    πŸ“Œ 1
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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

27.10.2025 18:42 β€” πŸ‘ 5    πŸ” 5    πŸ’¬ 0    πŸ“Œ 0

cc @ladaorg.bsky.social

27.10.2025 15:13 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

27.10.2025 15:10 β€” πŸ‘ 5    πŸ” 4    πŸ’¬ 1    πŸ“Œ 0
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#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

27.10.2025 05:05 β€” πŸ‘ 3    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0
Two ladies standing in front of a lupus community booth

Two ladies standing in front of a lupus community booth

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

26.10.2025 17:19 β€” πŸ‘ 13    πŸ” 5    πŸ’¬ 0    πŸ“Œ 1
A multicolored archway designating a Hall of Posters. There are people walking under it

A multicolored archway designating a Hall of Posters. There are people walking under it

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

26.10.2025 18:36 β€” πŸ‘ 9    πŸ” 3    πŸ’¬ 0    πŸ“Œ 0

These abstracts are embargoed until 10/25.

21.10.2025 06:07 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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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

21.10.2025 02:14 β€” πŸ‘ 6    πŸ” 4    πŸ’¬ 0    πŸ“Œ 0
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We are thrilled to share that our 25th Annual #Lupus Charity Golf Classic raised over $205,000 last week at Shenendoah Golf Course and we donated another $539,724 for #LupusResearch. Thank you to our volunteers, sponsors, golfers and #TurningStone sales, catering and golf staff.

23.08.2025 15:41 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Preview
77 Groups Sign Letter Urging Florida's US Senate Delegation to Reject Cuts to SNAP and Health Care Proposed cuts would have devastating impacts on Florida families.

We are one of 77 groups urging Sens. Rick Scott and Ashley Moody to reject proposed federal cuts to health care and SNAP.

Floridians will experience a devastating loss of essential health coverage & food assistance if these cuts are enacted. www.floridapolicy.org/posts/77-gro...

24.06.2025 00:56 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Thank you to #BIO
and Michele for giving our President & CEO Kathleen Arntsen the opportunity to share her #Autoimmune journey at #BIO2025 and why #Advocacy and Research are important. @annezab.bsky.social

18.06.2025 04:25 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
The #LADAOrg Team is excited to be here at #BIO2025 to bring the #PatientPerspective and partner with other stakeholders to advance global #Innovation that improves lives. Kudos to BIO for developing a great program and our dear friend Paul for being a good sport! πŸ’œ

The #LADAOrg Team is excited to be here at #BIO2025 to bring the #PatientPerspective and partner with other stakeholders to advance global #Innovation that improves lives. Kudos to BIO for developing a great program and our dear friend Paul for being a good sport! πŸ’œ

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The #LADAOrg Team is excited to be here at #BIO2025 in Boston to bring the #PatientPerspective and partner with other stakeholders to advance global innovation that improves lives. Kudos to BIO
for developing a great program and our dear friend Paul for always being a good sport! πŸ’œ

16.06.2025 07:05 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
We need cross-sector 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, more effective treatments, and cures.

We need cross-sector 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, more effective treatments, and cures.

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

31.05.2025 05:35 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
#Lupus is considered a disease of unmet medical need because of the lack of efficient diagnostic tools, effective therapies, and well-designed clinical trials. 

#LupusAwarenessMonth #LupusAwareness

#Lupus is considered a disease of unmet medical need because of the lack of efficient diagnostic tools, effective therapies, and well-designed clinical trials. #LupusAwarenessMonth #LupusAwareness

#Lupus is considered a disease of unmet medical need because of the lack of efficient diagnostic tools, effective therapies, and well-designed clinical trials.

#LupusAwarenessMonth #LupusAwareness

@lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social @ghlforg.bsky.social

30.05.2025 05:31 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
The annual per patient cost to employers, including medical care, work absence, and shortterm disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease. 

#LupusAwarenessMonth

The annual per patient cost to employers, including medical care, work absence, and shortterm disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease. #LupusAwarenessMonth

The annual per patient cost to employers, including medical care, work absence, and shortterm disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease. #LupusAwareness

@lupuschat.bsky.social
@masonicresearch.bsky.social

29.05.2025 09:21 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Many #lupus patients are concerned with potential side effects of both drug interventions as well as disease worsening such as hair loss, rashes, weight gain, gastrointestinal problems; outcomes that may be socially challenging to young people in the prime of their lives. @lupuschat.bsky.social

28.05.2025 09:07 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
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Disease onset coincides with critical years for education and career advancement, #lupus profoundly disrupts working lives. We need treatments that will improve qol so people with lupus can achieve their hopes and dreams and be parents.

#LupusAwarenessMonth #LupusAwareness

@lupuschat.bsky.social

27.05.2025 11:09 β€” πŸ‘ 5    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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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

26.05.2025 12:55 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Join us on BlueSky on May 18th at 3 PM Eastern Time as we continue #LupusAwarenessMonth with an honest #LupusTaughtMe discussion about how lupus has changed us, whether it's setting boundaries, adjusting how we move through the world, or simply getting through each day. You don’t have to feel like you’re thriving or learning to have a story worth sharingβ€”every experience matters.

Join us on BlueSky on May 18th at 3 PM Eastern Time as we continue #LupusAwarenessMonth with an honest #LupusTaughtMe discussion about how lupus has changed us, whether it's setting boundaries, adjusting how we move through the world, or simply getting through each day. You don’t have to feel like you’re thriving or learning to have a story worth sharingβ€”every experience matters.

Join us on Sunday, May 25th at 3 PM ET as we end #LupusAwarenessMonth with an honest #LupusChat discussion on how lupus has changed us through boundaries, daily survival, or shifting our lives. You don’t need to be thriving to share your story. Every voice matters. πŸ’œβœ¨ #LupusTaughtMe

20.05.2025 19:02 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

Hope you can join us! @elleonsound.bsky.social @bellaproduces.bsky.social @delightw2023.bsky.social @fklupus.bsky.social @katesattler.bsky.social @medusaswink.bsky.social @itsmorenamorena.bsky.social @ladaorg.bsky.social @musicum.bsky.social πŸ’œβœ¨

25.05.2025 19:12 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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#LADAorg
Kidney or Liquid Biopsy for Assessing Lupus Nephritis Activity
Andrea Fava
John Hopkins University School of Medicine, Division of Rheumatology, Baltimore, United States of America
@ladaorg.bsky.social
@lupuschat.bsky.social

#Lupus2025
#Lupuschat
#Lupus

25.05.2025 11:25 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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#LADAorg

Lupus Nephritis

#Lupus2025 #LupusChat #Lupus

@ladaorg.bsky.social
@lupuschat.bsky.social

25.05.2025 11:26 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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It is estimated that as many as one in every 250 African American women in America has #lupus and huge health disparities exist. There is a critical need for #socialdeterminants of health (SDOH) to be addressed as well. #LupusAwareness @lupuschat.bsky.social @caringforlupus.bsky.social

25.05.2025 06:59 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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Kudos to @zahitouma.bsky.social and the #LUPUS2025 organizers for hosting a wonderful Gala event last evening while the #LADAOrg team enjoyed the food, music and networking. #Lupus

@lupuschat.bsky.social @caringforlupus.bsky.social @annezab.bsky.social @alhkim.bsky.social

24.05.2025 06:36 β€” πŸ‘ 5    πŸ” 4    πŸ’¬ 0    πŸ“Œ 1

@ladaorg is following 19 prominent accounts