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
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
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.
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
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
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
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
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
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
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
ALT Weekly recap in ACR Journals banner - Arthritis & Rheumatology cover