Improving access to care & quality of life by wielding the patient voice as a catalyst to advance advocacy, education, awareness & research efforts.
Joined October 2016
- Tweets 11,092
- Following 5,118
- Followers 5,507
- Likes 13,015
1,091 Photos and videos
Pinned Tweet
May 31
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
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Lupus Association retweeted
We are hosting an Immunology Day event today for investors and analysts, where we are sharing new clinical data across our portfolio of T cell engager programs targeting CD19 and BCMA in autoimmune diseases. Learn more: investors.cullinantherapeuti…
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Lupus Association retweeted
Jun 5
We know this is a “suffer in silence” “soldier on” time for women w/rheumatic disease - Thanks for highlighting the need for better messaging & care 💜@LADAOrg @LupusMI @LupusNE @SandiFrear @Lupus_Chat @LAlupusLady
Jun 5
Menopause should be part of routine rheumatology practice.
Sharon closes this 🔝 talk with clear messages for clinical care:
-Ask routinely
-Recognise menopause as a modifier of RMD experience
-Address inequalities
-Support women through a holistic, culturally responsive MDT approach
#EULAR2026
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Jun 5
We appreciate you spreading #LupusAwareness
Jun 5
“#Lupus ends with us.” Wearing @LADAOrg wristbands help create an impact as LADAinc.org shares facts to empower awareness & #Rheum advocacy.
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Jun 4
High deductibles and hidden fees are driving up costs for healthcare and medications. #TXLege, please stand with patients and hold health insurers and PBMs accountable to improve affordability and access. #PrioritizePatients #TX4HealthAccess @DanielAldersTX @RepJamesFrank
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Lupus Association retweeted
Jun 3
Honored to join #Rheum professionals & the @ACRheum advocating on Capitol Hill next to a Calder yesterday. Looking up at one today… The art and impact of #RheumAdvocacyConference26
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Lupus Association retweeted
Jun 3
with @ACRheum professionals shared why #Rheum matters to patients on Capitol Hill. #RheumAdvocacyConference26
Grateful to @LADAOrg for supporting collaboration that empowers this #Lupus patient/advocate.
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Lupus Association retweeted
Jun 3
What a beautiful day on Capitol Hill.
#RheumAdvocacyConference26
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Lupus Association retweeted
Jun 2
Grateful to @LADAOrg for supporting me and the @ACRheum #RheumAdvocacyConf26 *amplifying the patient voice” #Rheum matters!
Jun 1
Enjoying @ACRheum ‘s #RheumAdvocacyConference26
because California doctors, OTs, Fellows and people living w/ #lupus care about #Rheum matters!
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Jun 3
We are grateful for #Lupus and #Arthritis Patient Experts like you sharing your story.
Jun 3
with @ACRheum professionals shared why #Rheum matters to patients on Capitol Hill. #RheumAdvocacyConference26
Grateful to @LADAOrg for supporting collaboration that empowers this #Lupus patient/advocate.
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Lupus Association retweeted
Jun 2
Thank you @LADAOrg for “amplifying the importance of the patient voice” in advocacy.
#RheumAdvocacyConf26 with @ACRheum
Jun 1
Enjoying @ACRheum ‘s #RheumAdvocacyConference26
because California doctors, OTs, Fellows and people living w/ #lupus care about #Rheum matters!
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Jun 2
ARE YOU READY? On July 1, the landscape of obesity care will change significantly with the launch of the @CMSGov GLP-1 Bridge program. Register for a critical conversation for clinical teams on how to navigate this new model before launch day. You can make the difference. Join us!
🗓️ June 18 ⏰ 12 PM or 7 PM ET
🔗 RSVP: obesitycareadvocacynetwork.c…
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Lupus Association retweeted
✅ and this is the start of the #SLICC group meeting at #EULAR2026. Moving forward ⏩ the care of #lupus patients 👍 We have an incredible panel of international #SLE experts in the room today 🌍🌎🌏
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Lupus Association retweeted
Jun 1
Absolutely thrilled to see Mary McGowan join this important conversation! I am joining 💜 @LADAOrg @LupusMI @LupusNE @Lupus_Chat @CaringForLupus @UMassLupus
We're counting down the days to #EqualResearchDay on June 10!
Join SWHR for a webinar about women’s participation in clinical trials. Register now and save your spot: ow.ly/bcKM50YV99i
#SWHRtalksWomenHealth
@StopSarcoidosis @CTTI_Trials @WomenHeartOrg
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Lupus Association retweeted
Jun 1
There is strength in numbers…
With @ACRheum & @ACRheumDC -collaborating matters.
@LADAOrg understands the importance of “amplifying the patient voice” together with @CSROAdvocacy @AWIRGROUP & others orgs.
#RheumAdvocacyConference26
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Jun 1
Thank you @carrainc for being such a great pediatric research organization and partner! 💜
💜We're proud to feature this important research partnership between @LADAOrg and CARRA during #LupusAwarenessMonth.
Read our blog ➡️ carragroup.org/blog/lada-par…
#lupus, #pedsrheum
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Jun 1
We are honored to have you represent #LADAorg! #LupusWarrior 💜
Jun 1
at the @ACRheum ‘s
#RheumAdvocacyConference26
“amplifying patient voices” representing @LADAOrg - as a person living with #Lupus & other #Rheum diseases.
#LupusAwarenessMonth
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Lupus Association retweeted
May 31
This @LADAOrg DYK!
I believe collaboration is key to improving innovative research, diagnostics, clinical trials and #lupus treatments.
On the 31st day of #LupusAwarenessMonth #LupusAwareness !
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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. Only 1 day to go before the end of #LupusAwarenessMonth. Thank you to all who promoted #LupusAwareness 💜🦋!
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May 30
Elevate the #PatientVoice Amanda, you are amazing!
May 30
Celebrating #LupusAwarenessMonth when you are going to be advocating with @ACRheum representing the “patient voice” on Capitol Hill is fun.
Grateful to @ACRheum and @LADAOrg for the honor to share my experiences living with Rheumatic Diseases with members of Congress.
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