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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 1d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 3d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 3d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 3d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 3d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 4d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 4d

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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 4d

cc @ladaorg.bsky.social

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 4d

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 4d

#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

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 5d

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

Two ladies standing in front of a lupus community booth

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Reposted by Lupus and Allied Diseases Association, Inc.

Tiffany @tiffanyandlupus.bsky.social · 5d

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

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 10d

These abstracts are embargoed until 10/25.

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · 10d

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · Aug 23

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.

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · Jun 24

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...

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.

www.floridapolicy.org

Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · Jun 18

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · Jun 16

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! 💜

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! 💜

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 31

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 30

#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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 29

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 28

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 27

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

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Lupus and Allied Diseases Association, Inc. @ladaorg.bsky.social · May 26

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

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Reposted by Lupus and Allied Diseases Association, Inc.

#LupusChat @lupuschat.bsky.social · May 20

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. 💜✨ #LupusTaughtMe

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 sharing—every experience matters.

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