Improving access to care & quality of life by wielding the patient voice as a catalyst to advance advocacy, education, awareness & research efforts.
Verona, NY
Joined October 2016
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Day 1 of #BIOPACE26 was filled with informative sessions on advocacy, policy access and research and development. #LADAorg loved connecting with KOLs like @nkartatx CEO Paul Hastings and
@IAmBiotech CEO
John Crowley. #PatientVoice
Lupus Association retweeted
TODAY at 1pm ET: What's the Future of #340B? Join ASBM & GaBI's webinar as former senior federal health officials & medical experts discuss what's next: HRSA’s rebate model, proposed #Medicare payment changes, contract pharmacy litigation & proposals to shift oversight to CMS. us06web.zoom.us/webinar/regi…
@LADAOrg
@WarOnCancer
@GlobalCRC
@OubreKathy
@MattieRheumMD
@AndrewRSpiegel
Lupus Association retweeted
November is "Family National Caregivers Month and it is a time to reflect on the dedication that family Caregivers embody every day".
Across 🌎 America, parents, daughters, sons, spouses, partners, are balancing the work of caring for a loved one 💗💜.
#Lupus #LupusChat
Lupus Association retweeted
How much do you really KNOW about your OTC pain medications? 💊
All #KNOWvember: Learn about ingredients, safety, treatment choices, expert answers, and what to ask when relief isn’t enough.
Follow along: uspainfoundation.org/knowvem…
#KNOWyourOTCs
Lupus Association retweeted
Evidence clear international drug pricing means delayed & denied access to care for rare disease patients. Read #ValueOurHealth paper providing policy lessons from UK’s System, alongside co-authors at United Liver, @speakfoundation & @CFRI_CureCF. cfri.org/wp-content/uploads/…
Lupus Association retweeted
🌟 We are excited to co-host the Pediatric Rheumatology Anniversary Lounge at @ACRheum Convergence in Orlando! We hope to see everyone there! 💙
50 years of progress. Generations of connection. One specialty worth celebrating!
Stop by, reconnect, and celebrate 50 years of progress for children and adolescents with rheumatic diseases during #ACR26 at the Pediatric Rheumatology Anniversary Lounge: Connecting Generations Room, W208A, November 8–10.
Discover your roots! Explore our virtual pediatric rheumatology “family tree” to find your mentors, trainers, and trainees.
Sunday, November 8
• 8 AM–5 PM: It’s Peds Rheum Picture Day! Stop by the photobooth and make memories with colleagues, friends, and mentors.
• 10:30–11:30 AM: Pediatric Rheumatology: Navigating the New ABP Fellowship Landscape
• 1–2 PM: Pediatric Early Investigators
Monday, November 9
• 8 AM–1 PM: The Donut Wall is back! Grab a sweet treat and celebrate with colleagues.
• 11 AM–noon: Meet the Editors: Pediatric Rheumatology Journal
• 1–2 PM: Clinical Trials for Pediatric Fellows and Early Investigators
Search “ACR Convergence 2026” in your mobile app store and log in with your registration credentials to add these events to your schedule.
Co-sponsored by CARRA (Childhood Arthritis and Rheumatology Research Alliance) and the ACR.
Learn more about the 50th anniversary here: acr.tw/4eIbNya
This #RSVAwarenessMonth, learn how expecting moms can take steps to help protect their babies from severe #RSV illness either through maternal vaccination or infant immunization: cveep.org/respiratory-diseas…
Lupus Association retweeted
✅ Please help us disseminate #STRIDE. This is an important study in which we are trying to map systematically #access and #availability of care in #lupus, across the world 🌎 Our target is AT LEAST ONE ANSWER PER COUNTRY, which we will not be able to achieve without your help 🙏
✅ Are you a MEDICAL DOCTOR taking care of #LUPUS? We are trying to map availability and accessibility of #SLE treatments in EVERY COUNTRY OF THE WORLD 🌍🌎🌏
Please help us by filling-in our #STRIDE study 🙏🔄
LINK:lupusresearch.limequery.org/…
Kudos to Elizabeth for sharing her impactful #Carepartner journey with Miah. @CaringForLupus
Lupus Association retweeted
✅ A pleasure and an honor to discuss innovative #treatment strategies for systemic #Lupus at the IX Armenian National #Rheumatology Conference🙏
The friendship between France and Armenia is strong, and we are excited to launch new bilateral #research opportunities together 🇫🇷🇦🇲
Kudos to @csroadvocacy for bringing rheumatology stakeholders to Capitol Hill to discuss #Access to care and treatment issues with policymakers. #LADAorg is honored to share our #PatientPerspective.
Lupus Association retweeted
With the school year underway, we thought it was an appropriate time to provide caregivers with guidance on how to navigate school when you have a child with a rheumatic disease, as school can present unique challenges. We have the answer in this short video, acr.tw/4AnCORT, with board-certified Pediatric Rheumatologist, Dr. Miriah Gillispie-Taylor, answering this question and more as part of our playlist, Little Joints, Big Questions. This video explores the value of communication between families, educators, school nurses, and health care teams.
Check out the official website for Rheumatic Disease Awareness Month at RDAM.org for additional resources to help families navigate life with rheumatic disease. #RDAM #PedsRheum
Thank you, @CAgovernor for signing #AB2009 by @PhillipChenCA and @AsmSolache. By modernizing California’s source plasma donation center regulations, this law will ensure that patients who depend on plasma-derived medicines have access to them when they need them most.
Lupus Association retweeted
NEW ISSUE ALERT! The September 2026 issue of ACR Open Rheumatology is now available → acr.tw/3QokSnI @ACR_Journals
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
🤖 Made with AI
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.