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Lupus Association
11K posts

Lupus Association
@LADAOrg
Improving access to care & quality of life by wielding the patient voice as a catalyst to advance advocacy, education, awareness & research efforts.
Verona, NY 가입일 Ekim 2016
5.1K 팔로잉5.5K 팔로워
Lupus Association 리트윗함

🦋 @michaelb4jordan is a winner and champion who took his mother, a #LupusWarrior to the #Oscars
I believe that #LupusAwareness is fun,
but living with #Lupus is no joke.
Advocating for and supporting the work of @ACRheum and @LADAOrg matters!

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Great job Trisha! #PatientVoice
Trisha@TrishaReads8
Immensely grateful to the incredible team @curearthritis for allowing me to share my story. The opportunity to be in the room to hear about research continues to give me hope for our entire rheumatic patient population. We truly are #strongertogether. 💜💁🏻♀️💜#lupus
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The fight against copay accumulator policies isn't over. The 2026 copay accumulator report breaks down how CAAPs work and grades every state based on how many marketplace plans use them. See where your state stands: bit.ly/4uhOQJx #AllCopaysCount

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Lupus Association 리트윗함

#Antiphospholipid antibodies and #cardiovascular #thrombosis, now in @NatRevCardiol 👇:
dlvr.it/TRQCr6
Systematic summary across various conditions. In some cases, we challenge the old conventional thinking...
Truly multidisciplinary, led by our 🌟fellow @SinaRsh

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The 340B program needs significant reform. We are calling on @GovKathyHochul @AndreaSCousins @NYSA_Majority to track where savings are going and prioritize transparency and patient benefit requirements! @patientaccess @IAFaccess @aimedalliance @GHLForg
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Did you know 20+ states have passed biomarker testing coverage laws? These laws protect patients—but many insurers still aren’t complying. We’re pushing for accountability so the law works in real life. #BiomarkerAccess
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Lupus Association 리트윗함

✅ Look at what I was presented with during the opening ceremony of #ELM2026 😀 Being the President of European #Lupus Society @SLEuroSociety has been an incredible adventure, in particular with the white book, and the advanced #SLE Workshops.
This is dedicated to #PATIENTS 🏆

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NEW @AIDSadvocacy report finds nearly 40% of marketplace plans use copay accumulator policies that hurt patients with chronic illnesses. 31 states have plans with CAAPs despite federal court ruling. Download state-by-state data: bit.ly/4uhOQJx #AllCopaysCount

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Lupus Association 리트윗함

Hoy es día Mundial 🌏 de Enfermedades Raras!
Hay más de 6⃣0⃣0⃣0⃣ enfermedades raras
🌏 300 millones de personas viven con una enfermedad rara en todo el mundo
Las enfermedades raras afectan actualmente del 3,5% al 5,9% de la 🌎 población👨👩👧👦 mundial
#Lupus #LupusChat

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Lupus Association 리트윗함

✅ Check the complex relationships between #cognitive symptoms such as #brainfog, objective #cognition dysfunction and MANY perturbators commonly identified in systemic #Lupus ⬇️

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Lupus Association 리트윗함

Paper reviewing the current and future direction of the treatment of #lupus nephritis #SLE #MedTwitter reference👇


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Lupus Association 리트윗함

ATAP has submitted formal comments urging CMS to reconsider its proposed GLOBE and GUARD drug pricing models. We explain why true reform must address rebate incentives, formulary manipulation, and opaque pricing structures that raise costs for patients.
atapadvocates.com/atap-news/2026…
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Lupus Association 리트윗함

ASBM commends @SenatorBanks for introducing the SAFE Drugs Act — vital legislation to strengthen oversight of large-scale drug #compounding and protect patients from unsafe copycat medicines.
Read our full statement: safebiologics.org/asbm-statement… @LADAOrg @GlobalCRC @WarOnCancer
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Lupus Association 리트윗함

✅ Very happy to report that @ern_reconnet @SLICC and @SLEuroSociety have finalized the second part of the recommendations for the treatment of RARE #LUPUS MANIFESTATIONS, adding 24 NEW manifestations to the previous list. May this help improve #SLE care where needed 🙏

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Some Ohio public universities using discriminatory copay financial diversion programs against their employees, and who will not participate in the public debate process, are working behind the scenes to stop #OhioSB207.
Call your State Senatortoday and ask for their support!

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Lupus Association 리트윗함

✅ After ~200h of work, how far have I been able to take #COGNILUP?
➡️ Online platform to assess #cognition in systemic #Lupus
➡️ 12 different #neuropsychological tests with gaming
➡️ Assessment of stress, depression, anxiety, pain, fatigue sleep issues
➡️ Patient & doctor modes

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Lupus Association 리트윗함

ASBM welcomes @DrMakaryFDA's reminder that FDA cannot verify the safety or quality of compounded drugs. We urge @US_FDA to back these words with strong enforcement so large-scale compounders can’t evade oversight or put patients at risk. Read our statement here: tinyurl.com/saferxcomp @GlobalCRC @LADAOrg @WarOnCancer @maxonwifi
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Lupus Association 리트윗함

ATAP applauds Congress and the Administration for advancing meaningful PBM reforms — historic, overdue, and good for patients nationwide.
Let’s keep the momentum going to make meds affordable for all.
atapadvocates.com/atap-news/2026…
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The #MCEDAct has officially passed. This is a landmark victory for patients and families and a major breakthrough for early cancer detection. Thank you @preventcancer for your leadership!
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We are proud to stand with 550+ advocacy organizations across the country in rooting for the #MCEDAct. Thank you @MikeCrapo @SenatorBennet @SenatorTimScott @RonWyden @RepArrington @RepTerriSewell @RepHudsonNC @RepRaulRuizMD for your leadership let’s get it across the finish line!
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