Lupus and Allied Diseases Association, Inc.

Kudos to CSRO for bringing rheumatology stakeholders to discuss #Access to care and treatment issues with policymakers. LADA is honored to share our #PatientPerspective. Thank you @congressmannion.bsky.social @kirstengillibrand.bsky.social @schumer.senate.gov for meeting with us.

We are thrilled to share that our 26th Annual #Lupus Charity Golf Classic was a tremendous success raising $207, 232 for our education, #awareness, #advocacy and research programs. We also donated a recordbreaking $618,612 to for lupus research. @mmriresearch.bsky.social @lupusresearch.bsky.social

Bravo to the FDA, CARRA and the passionate #patient and #carepartner representatives Miah, Elizabeth, McKenna, Chloe and Nia, and researchers for making the FDA Workshop to advance pediatric #lupus drug development a success! Mike drop! #LADAOrg @caringforlupus.bsky.social @annezab.bsky.social

Dr. Hermine Brunner shared Lessons Learned from Conducting Clinical Trials in Pediatric SLE. Dr. Brunner discussed how trials have been delayed due to restrictive eligibility criteria and recruitment/enrollment difficulty. #LupusChat #LADAorg @ladaorg.bsky.social

Patients and Care Partners, McKenna Bowes, Chloe Raymond, Nis Cooper, Elizabeth SantaCruz, and Miah Andrade for the final patient panel of the day Patient/Family Panel: Risk Tolerance and Enrollment in Clinical Trials moderated by Dr. Stacy Ardoin #LupusChat #LADAorg @ladaorg.bsky.social

Low dose ASA (81mg or 325mg) increase gout attacks by 81% (RR 1.81). Effect nullified by allopurinol use. For more gout content, follow our Gout: More than Flares campaign at buff.ly/ysjKsTy,

We need innovative research that includes cross-sector collaborations and public-private partnerships, identifies causes, biomarkers, better trial methodologies, diagnostic measures and treatments, prevents complications, and eradicates #lupus. #LupusAwarenessMonth @lupuschat.bsky.social

#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 💜🦋! @michiganlupus.bsky.social

The annual per person with #lupus cost to employers, including medical care, work absence, and short-term disability, is higher than for other chronic diseases such as diabetes, chronic obstructive pulmonary disease, and heart disease. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social

We are proud to be one of @CVEEP’s 300 partners working together to share information on #vaccines and help protect communities from infectious diseases. We look forward to furthering this important work alongside CVEEP. Learn more: cveep.org

People with #lupus are concerned with potential side effects of drug interventions as well as disease worsening such as hair loss, rashes, weight gain, gastrointestinal problems; outcomes that may be socially challenging to young women and men in the prime of their lives.  #LupusAwarenessMonth

#Lupus typically begins during critical years for education and career advancement, lupus profoundly disrupts working lives. We need better diagnostic tools and treatments so that we can achieve our life goals! #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social

While some drugs do benefit people with #lupus, significant side effect profiles exist and can cause increases in infections, cancer, bone loss and osteoporosis, sterility, and stroke among many other adverse health consequences. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social

Classification criteria are used to define #lupus research study populations due to lack of specific #biomarkers resulting in combining heterogeneous patients with various disease manifestations and pathophysiologies and pathogenesis into one group. #LupusAwarenessMonth @lupuschat.bsky.social

It is estimated that as many as one in every 250 African American women in America has #Lupus. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social @rheumcat.bsky.social @rheumresearch.bsky.social

#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth @lupuschat.bsky.social @michiganlupus.bsky.social

#Gout is a systemic disease that can impact the entire body. Managing gout may help reduce the risk of other serious conditions so talk with your provider about your symptoms to get the most appropriate care. Discover more this #GoutAwarenessDay: goutalliance.org/gout-awarene... #goutalliance

Although #lupus is more severe and more prevalent in non-white populations, recruitment of minority patients to participate in clinical trials has proven to be particularly challenging. #lupusawarenessmonth #lupusawareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Women of color tend to develop #lupus at a younger age, experience more serious complications and have higher mortality rates—up to 3 times the incidence and mortality of Caucasians. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Clinical trials aren’t designed to measure outcomes which are most important to those with #lupus such as mitigating fatigue, daily health-related qol, reduction in current drug regimen, steroid-sparing, side effect tolerability, and comorbid conditions. #LupusAwareness @lupuschat.bsky.social

Join us this Thursday, May 21st to call on Congress to support the #SafeStepAct. One-size-fits-all step therapy policies cause unnecessary delays and potential harm. Make your voice heard and call on your lawmakers to co-sponsor the #SafeStepAct. @michiganlupus.bsky.social bit.ly/StepAct

#Lupus disproportionately affects women of color in the United States; it is 2 to 3 times more common among African-Americans, Hispanics and Latinos, Asians, and Native Americans. #LupusAwarenessMonth #LupusAwareness @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

There are significant challenges in creating a uniform control group in #lupus clinical trials because of the variety of background and concomitant medications—usually immunosuppressants. #LupusAwarenessMonth #autoimmune @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social

Some drugs used to treat #lupus are approved for other indications such as chemotherapies, used to treat cancer, and immunosuppressants, used post organ transplantation. Some are known to be teratogenic (causing birth defects) and often compromise fertility in men and women. @lupuschat.bsky.social

Ninety percent of those affected are women; however, men and children are also diagnosed with #lupus. #LupusAwarenessMonth #LupusAwareness @caringforlupus.bsky.social @lupuschat.bsky.social @mmriresearch.bsky.social @michiganlupus.bsky.social

#Lupus is an unpredictable condition in which symptoms come and go (flares) and complications can arise suddenly. We need #innovative research that can identify a reliable method to predict and prevent flares before they occur. #LupusAwarenessMonth @lupuschat.bsky.social @caringforlupus.bsky.social

The absence of reliable #biomarkers is a challenge for clinicians in providing the most optimal patient care and is impeding the development of new #lupus therapies. #LupusAwarenessMonth @michiganlupus.bsky.social @lupuschat.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social

#Lupus affects women 9 times more often than men, with eighty percent of new cases developing between the ages of 15 and 44 during their child-bearing years or prime of life. #LupusAwarenessMonth #LupusAwareness @caringforlupus.bsky.social @lupuschat.bsky.social @michiganlupus.bsky.social

There is no known cause or cure for #Lupus or #LupusNephritis. Research is critical to discover the pathogenesis of lupus, better treatments and improve lives. #LupusAwarenessMonth @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Show your support for those affected by #lupus throughout the world by promoting #LupusAwareness today and wearing your purple for #WorldLupusDay #MakeLupusVisible WorldLupusDay.org/tool-kit @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social

Forty percent of people with #lupus are diagnosed with #lupusnephritis, which is kidney inflammation that can lead to kidney failure.  #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Help us celebrate #WorldLupusDay on Sunday by joining us in our #HatsOn4Lupus campaign to promote global #LupusAwareness. Just put on a hat and take a photo and post or send to us @caringforlupus.bsky.social @lupuschat.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

By the most conservative estimates, there are at least 322,000 Americans with definite or probable #lupus. Recent independent surveys have suggested a prevalence as high as 1.5 million. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social @mmriresearch.bsky.social

Only five treatments are approved for #lupus (aspirin, corticosteroids, hydroxychloroquine, belimumab, and anifrolumab-fnia) and three drugs for lupus nephritis (belimumab, voclosporin and obinutuzumab). #autoimmune @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social

Developing disease-modifying therapies in #lupus has proven difficult given the heterogeneity of the disease, unpredictable relapsing and remitting course of the symptoms, and the lack of validated biomarkers, inadequate clinical endpoints & outcome measures. #lupusawareness @lupuschat.bsky.social

#Lupus is a leading cause of kidney disease, stroke and premature cardiovascular disease in young women and is highly individualized, extremely volatile, debilitating, life-diminishing, and potentially fatal. #lupusawareness #lupusawarenessmonth @lupuschat.bsky.social @caringforlupus.bsky.social

33% of people with #lupus in the US are on work disability and the majority of them rely on a government-sponsored health plan such as Medicare and Medicaid. Access to care and treatments is crucial to helping us reach our education & career goals. #lupusawareness @lupuschat.bsky.social

#Lupus clinical research has been problematic due to the lack of basic understanding of the disease, reliable biomarkers, and uniform control groups, as well as clinical outcome measure limitations and the heterogeneity of the patient population. #lupusawareness #autoimmune @lupuschat.bsky.social

On average, a person with #lupus takes between 8-12 medications a day, requiring careful attention to drug interactions and unique allergies and sensitivities. #lupusawarenessmonth #autoimmune @lupuschat.bsky.social @caringforlupus.bsky.social @michiganlupus.bsky.social @mmriresearch.bsky.social

Lupus is an extremely complex chronic inflammatory autoimmune disease where a triggering agent causes the immune system to dysregulate and attack the patient affecting any organ system of the body; including the skin, joints, kidney, brain, heart, lungs, blood & blood vessels. @lupuschat.bsky.social

LADAorg was honored to sponsor the @masonicresearch.bsky.social 3rd Annual 1958 Gala to support #lupus #autism and #cardiovascular disease research. Kudos to Dr. Maria Kontaridis and the #MMRI Team for hosting such a wonderful event. @annezab.bsky.social

With only 7 days to go, are you ready to promote #LupusAwareness during May? Join us by sharing our 31 days of #Lupus facts to educate others about this unpredictable, life altering, dream stealing, and physically, emotionally and financially devastating #Autoimmune disease. @lupuschat.bsky.social

Now is the time to act: the #MCEDact must pass. We join @preventcancer.org in calling on our NY leaders @chuckschumer.com and @hakeem-jeffries.bsky.com to pass this crucial legislation to improve access to the latest early #cancer detection tools. @lupuschat.bsky.social @infusionaccessfoundation.org

The 340B Program’s costs skyrocketed from $6.6B in 2010 to $43.9B in 2021, but patients are missing the savings. We need transparency and reform to support patients in need. @SenMullin, Congress must pass #340BReform. www.cbo.gov/publication/...

#LADAorg is honored to sponsor a table at the LRA Gala to recognize people with #lupus for their grace, dignity and courage while supporting #lupusresearch. @lupuschat.bsky.social @annezab.bsky.social @caringforlupus.bsky.social @masonicresearch.bsky.social @lupusresearch.bsky.social

Want to see Medicaid’s impact on your community? @ModernMedicaid’s updated #MedicaidDashboard is a one-stop-shop for national, state and district-level enrollment data. Check out the site for more: data.modernmedicaid.org @lupuschat.bsky.social @michiganlupus.bsky.social @caringforlupus.bsky.social

The #LADAorg Team is thrilled to attend and exhibit at #RNS2025 in beautiful San Antonio to network, learn, share resources and elevate the #PatientVoice in Rheumatology! Kudos to RNS President Teri Puhalsky and Executive Director Sadie Larson for hosting the Annual Conference. #Lupus

No es necesario navegar por páginas de farmacias este otoño: el nuevo Localizador de Vacunas de @CVEEPSocial lo ha simplificado. Encuentra sitios de vacunación cercanos en un solo lugar y este otoño, programa tu cita fácilmente. Más: cveep.org/es/vaccine-locator/ @lupuschat.bsky.social

Fall is a critical time to stay protected against respiratory diseases. @CVEEPSocial’s new Vaccine Locator is a helpful tool that makes finding a nearby vaccination site easy. Find pharmacies and health centers and schedule an appointment today: cveep.org/vaccine-locator @lupuschat.bsky.social

CC for interest @kristenyoung.bsky.social @rheumcat.bsky.social @lupusdnadoc.bsky.social @lupuschat.bsky.social @ladaorg.bsky.social @lupusresearch.bsky.social