Lupus Association

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

[Lupus Association @LADAOrg]

We need innovative #lupus research initiatives that include cross-sector collaborations, public-private partnerships and robust basic, clinical and translational projects that will enable scientists to investigate disease pathogenesis and physiology, identify biomarkers, design better clinical trial methodologies, prevent complications, develop precise diagnostic measures and safer, more effective treatments, and ultimately eradicate this devastating disease. #LupusAwarenessMonth #LupusAwareness

[Laurent ARNAUD @Lupusreference]

✅ Very happy to be part of this work on disease modification in #lupus #nephritis as part of the @ERAkidney network 👍 Check this beautiful paper showing what we think is the way in immunotherapy for #renal involvement in #SLE 👍
📥 LINK: https://t.co/So5u1UKFNY

[Lupus Association @LADAOrg]

Yes many of us with lupus have sjogrens and other autoimmune conditions.

[Arcade Impact | SwolitaBot recovering from BITE9 @LolitaBot613]

I have this one too

[ATAP @ATAPAdvocates]

ATAP supports H.R. 6610 now heading to markup!

This bill fights PBM overreach across Part D, Medicare Advantage, Medicaid, FEHB & TRICARE by:

Banning spread pricing & steering
Capping beneficiary cost-sharing at 80% of rebates Protecting generic access over brand-name
Imposing $1M fines per violation

Transparency and fair pharmacy reimbursement = lower costs for patients.
https://t.co/aPjLgQdsZb

[Lupus Association @LADAOrg]

Stand with all impacted by #Sjogrens on #WorldSjogrensDay to promote Awareness globally for this misunderstood and often debilitating #Autoimmune disease. @SjogrensOrg @SjogrensCa @SjogrensUK @SjogrenEurope @SjogrensForum

[ATAP @ATAPAdvocates]

Patients are paying the price for hidden PBM practices. Today, ATAP and coalition partners told @CMSgov: enough is enough.
Our letter demands stronger implementation of PBM reforms — comprehensive reporting, closed loopholes, and real transparency so patients aren’t left in the dark.
Full story & letter 👇 https://t.co/oyFRnZd6WE
Together we’re fighting for lower costs and better access.

[Trisha @TrishaReads8]

Our @CullinanTx friends share lived experience what the diagnosis process looks & SOUNDS like for patients. A heartbreak that so many hear “it is in your head” #worldsjogrensday #lupus @LADAOrg

[Regulatory Relief Coalition @regrelief]

✅ Another milestone! The #Seniors' Act (H.R. 3514) is through the full @EnergyCommerce Committee — clearing its second House committee! Thank you, @RepDebDingell, for standing up for seniors and patients! #FixPriorAuth

[ATAP @ATAPAdvocates]

TAP has joined the PBM Accountability Project and other advocates in a powerful coalition letter urging @CMSgov to bring REAL transparency to Pharmacy Benefit Manager (PBM) practices.
We’re calling for closed loopholes, full revenue reporting, and an end to the opaque practices driving up drug costs.
Read the full letter: https://t.co/oyFRnZd6WE

[Laurent ARNAUD @Lupusreference]

✅ Quel est le lien entre le #LUPUS, le #brainfog, la douleur, le stress, etc. ? Si vous souffrez de #LUPUS, AIDEZ-NOUS à mener l'étude #CORRELATE. En participant, vous obtiendrez votre SCORE #LBFSS de brainfog et contribuerez à cette recherche
🦋LIEN : https://t.co/O7Rfp5PBqS

[Laurent ARNAUD @Lupusreference]

✅ ¿Cuál es la relación entre el #LES, el #brainfog y el dolor, el estrés, etc.? Si tienes #LUPUS, POR FAVOR, AYÚDANOS con el estudio #CORRELATE. Al participar, obtendrás tu puntuación en línea del #LBFSS y contribuirás a esta investigación
PARTICIPAR:https://t.co/Lub4JYPGDL

[Lupus Association @LADAOrg]

Wonderful news!

[U.S. Pain Foundation @US_Pain]

A big step forward for the pain community!

Thank you @SenTimKaine, @SenKevinCramer, @AndyKimNJ, @SteveDaines for introducing the bipartisan #AdvancingResearchForChronicPainAct. Better data = better research—and better care—for the 60+ million Americans living with #chronicpain.

[CSRO @CSROAdvocacy]

CSRO is excited to be on Capitol Hill with @SpecialtyDocs to advance issues important to our practices and our patients. Thanks
@MattieRheumMD and Dr Broadwell for coming to DC!

[Regulatory Relief Coalition @regrelief]

Thank you, @RepThompson, for your support in passing the #SeniorsAct through the @WaysMeansCmte committee by a unanimous 42-0 vote! "This is a key step forward in ensuring out seniors get the care they need and with this passage we get closer to ensuring timely care."

[Lupus Association @LADAOrg]

Do you know if you’re at higher risk for severe illness from COVID-19 or flu? @CVEEPSocial’s updated “Am I At Risk?” page includes information on common risk factors, treatment options, and a digital risk calculator to help you understand what steps to consider if you get sick. Learn
more: https://t.co/OnmGeD6o3C

[Laurent ARNAUD @Lupusreference]

✅ What is the relationship between #SLE #brainfog, and pain, stress, anxiety, etc... If you have #LUPUS PLEASE HELP US with the #CORRELATE study. By participating you will get your online brainfog #LBFSS score and help this research 🙏🔁 ️
🦋LINK: https://t.co/10Vg8KPfnJ

[Armen Yuri Gasparyan @ArmenYuri]

Usefulness in daily practice of the Systemic Lupus Erythematosus Disease Activity Index 2000 scale and the SLE Disease Activity Score index for assessing the activity of SLE
@SLEuroSociety @TheLupusForum @LADAOrg @IoannisParodis @Reumatologia_uy
https://t.co/l4ONDhKus7

[Laurent ARNAUD @Lupusreference]

✅ Interested in knowing more about #brainfog in #lupus? And more particularly about the use of the #LBFSS? Check our video below as well as table 3 in the openaccess paper at https://t.co/uolVusm0lk

[Lupus Association @LADAOrg]

We are proud to join 90+ patient and provider groups in urging @CMSGov @DrOzCMS to strengthen prescription drug coverage and enforce Essential Health Benefits (EHB) protections. Read the letter here: https://t.co/0Zn9DZLUgd

[Amanda G @LAlupusLady]

One of my favorite #Lupus resources the @ACRheum provides - do you know about @LupusInitiative ?

#Rheum matters.

[Lupus Association @LADAOrg]

We were honored to join others in supporting access to proven positive #cardiac interventions such as #TAVR. #LADAorg

[Alliance for Aging Research @Aging_Research]

The Alliance for Aging Research, @pfcd and 18 other patient advocacy, provider, and caregiver organizations submitted comments to CMS, urging the agency to finalize changes to expand #TAVR access, and extend national coverage without CED to Medicare patients with asymptomatic severe #AorticStenosis.

Read more: https://t.co/lbKODMk0HC