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

Verona, NY
We are thrilled to share that our 26th Annual #Lupus Charity Golf Classic was a tremendous success raising $207, 232 for our education, #awareness, #advocacy and research programs. We also donated a recordbreaking $618,612 to @MMRIResearch @LupusResearch @LupusOrg @carrainc @RheumResearch for lupus research. #LADAOrg
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Lupus Association retweeted
Fibromyalgia is not “imagined pain.” The largest genetic study to date - spanning 2.5 million individuals - identified 26 genetic risk loci, strengthening the biological basis of fibromyalgia and opening new paths to understanding pain biology. A meaningful step forward in a condition that patients have long struggled to have taken seriously. #Fibromyalgia #Rheumatology @DurgaPrasannaM1 @IhabFathiSulima @FibroHealthOrg #PainMedicine #Genetics #MedicalResearch
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Wonderful information, thank you. @CaringForLupus @Lupus_Chat
Explaining a child's rheumatologic or autoimmune diagnosis to your family and friends can feel overwhelming. Pediatric Rheumatologist Dr. Miriah Gillispie-Taylor shares tips for having an honest, age-appropriate conversation. For more, visit RDAM.org.
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Lupus Association retweeted
ASBM’s former chairman, Dr. Madelaine Feldman, participated in the first panel of yesterday's #AfPASummit26: “The bottom line in pricing needs to be brought back to the patient’s ability to access the medication. For example -Many times affordability could be achieved by allowing the patient to pay their cost share (co-insurance) on the lowest post rebate/discount price of the drug.—including by basing cost-sharing on the lowest post-rebate price, especially for Part B drugs." @MattieRheumMD @patientaccess @LADAOrg @GlobalCRC @WarOnCancer @CSROAdvocacy
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Lupus Association retweeted
Overwhelmed patient. Overloaded provider. An appointment that misses the mark despite good intentions. Patient advocate Tom Norris offers a path forward in the quest to create #OneMovement for #ChronicPain. Read + share: uspainfoundation.org/blog/pa… #OneVoiceForPain #LetsChangePain
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Lupus Association retweeted
Today at 2 p.m. ET, ASBM’s inaugural chairman, endocrinologist Dr. Richard Dolinar, participates in a fireside chat at the 4th Annual #BESAFE Conference @JohnsHopkins Bloomberg School of Public Health in Washington, D.C. He’ll discuss compounded GLP-1 medicines, falsified products, and the need for increased regulatory enforcement by @US_FDA Learn more about the risks of unsafe pharmacy compounding at SafeRxCompounding.org @waroncancer @BeSafenofakes @GlobalCRC @LADAOrg
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Lupus Association retweeted
Supporting a student with lupus takes more than awareness—it takes practical tools. As students with lupus head back to the classroom, you can play an important role in helping them stay healthy, supported, and engaged in learning. Download our free resources to learn more → RDAM.org
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Lupus Association retweeted
#AllAges → #CountlessDiagnoses → #MillionsOfStories → #OneMovement Each week of #PainAwarenessMonth has built toward this one. We’re starting Week 4 with a look at #ChronicPain policy & why it matters. Read + share: uspainfoundation.org/news/wa… #OneVoiceForPain #LetsChangePain
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Lupus Association retweeted
Rheumatic Disease Awareness Month (RDAM) offers a powerful moment to highlight pediatric rheumatology and its 50-year legacy of improving children’s lives. Under the theme Little Joints, Big Impact, we recognize how pediatric rheumatic diseases affect growth, school participation, and family life—and celebrate the pediatric rheumatologists, teams, and advocates who have advanced early diagnosis, multidisciplinary care, and better outcomes for young patients. Join us in amplifying pediatric rheumatology during RDAM: share educational resources, support referral pathways, and help ensure that children with rheumatic disease receive the timely, expert care they deserve. Visit RDAM.org for more information. #RDAM #PediatricRheumatology #ChildrensHealth
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Lupus Association retweeted
Recap a week of great research in Arthritis & Rheumatology: MRI and radiographic outcomes of bimekizumab on inflammatory and structural lesions in axSpA doi.org/10.1002/art.70336 Cardiac function following autologous stem cell transplantation in diffuse SSc doi.org/10.1002/art.70338 Incidence of polymyalgia rheumatica across two decades in Denmark doi.org/10.1002/art.70337 Comparing safety of common immunosuppressant therapies in SLE doi.org/10.1002/art.70343 Transcriptomic profiling in skeletal muscle associations with knee OA doi.org/10.1002/art.70341 RISE registry participation associated with gains in quality measure performance doi.org/10.1002/art.70340 Early diagnosis of axSpA associated with less long‐term spinal structural damage doi.org/10.1002/art.70346 Cluster analysis to identify disease phenotypes in CPPD doi.org/10.1002/art.70345
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#MedicaidMatters to millions of Americans who are in danger of losing their Medicaid coverage, resulting in their healthcare costs increasing and their care delayed. Congress needs to protect #Medicaid. @ModernMedicaid @SenSchumer @SenGillibrand
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Lupus Association retweeted
Primary care teams play a key role in recognizing pediatric rheumatic disease early. When symptoms persist, referral to pediatric rheumatology can help families get answers sooner. Download our reference sheet, acr.tw/4xvEd6L, for more details about when it's time for a referral. For 50 years, pediatric rheumatologists have been helping children with rheumatic diseases grow, play, and thrive—despite pain, stiffness, and fatigue. RDAM honors the children and families living with rheumatic disease and the dedicated clinicians who care for them. Join us in raising awareness, promoting early diagnosis, and supporting access to pediatric rheumatology so every child’s future can be as strong as their spirit. Visit RDAM.org for more information. #PedsRheum #EarlyDiagnosis #RDAM
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What is shared clinical decision-making (SCDM)? A @CVEEPSocial white paper explores the challenges and implications of #SCDM for #vaccine awareness, administration, uptake, and access. Learn more: cveep.org/news/shared-clinic…
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Lupus Association retweeted
Our Protecting #DisabilityBenefits After Approval series began with "Understanding Routine Reviews." Learn about surveillance, social media monitoring, treatment requirements, and common pitfalls. Watch and share: piped.video/watch?v=976LjxkA… #PainAwarenessMonth #OneVoiceForPain
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Being “difficult” is often just being unheard. Teach clinicians to ask better questions. Teach patients they have the right to answers. That is advocacy. #PainAwarenessMonth #VoiceForPainAwareness #MyPainIsLike
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Lupus Association retweeted
Why is early diagnosis so important in pediatric rheumatology? The 2026 Rheumatic Disease Awareness Month campaign spotlights pediatric rheumatology and offers resources to help parents, schools and primary care clinicians improve awareness and early diagnosis of, and care for, children with rheumatic disease Read more → acr.tw/4h3iVqi #RDAM
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September is Rheumatic Disease Awareness Month, join us in promoting earlier symptom recognition and diagnosis in #PediatricRheumatology care so that kids can be kids! #RDAM Visit acr.tw/4qK09bI to learn more.
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