Amplifying the Patient Voice

throughout the healthcare, regulatory and public policy arenas and across the research continuum!

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For the past 43 years, the Lupus and Allied Diseases Association, Inc., has been providing education, support, and outreach services for people impacted by lupus and allied diseases while wielding the patient voice as a catalyst to advance awareness, advocacy and research initiatives.  

 

For the Fiscal Year ending on September 30, 2020 our organization's administrative costs were less than 1.0% leaving more than 99.0% of every dollar raised going directly to our Program Services!

 

It is our hope that if you have lupus and/or an allied disease or love someone with lupus that you will use this website and our programs as tools to become empowered to take control and learn to manage the disease to live life to the fullest. We know firsthand that lupus and allied diseases do not just affect an individual, but also impact family, friends and others close to you.

Know that we are here for you and your loved ones as we all continue on our lupus journeys.

What's New

Record Breaking Lupus Charity Golf Classic

 

LADA's 21st Annual Lupus Charity Classic was held on Thursday, August 19, 2021 at beautiful Shenendoah Golf Course at Turning Stone Resort in Verona, NY. The golfing, lunch and dinner were again modified to include mandatory face masks and other safety precautions due to ongoing COVID-19 concerns. The event was a great success despite the rain, making over $118,000 for our programs.  Click here to learn more

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Lupus Research Program Support Expansion 

 

LADA is thrilled to share that we announced that we expanded our research program investments in 2021, making it a record year of giving to lupus research at our 21st Annual Lupus Charity Golf Classic Awards Dinner held on August 19th at the Shenendoah Golf Course. We donated an incredible  record breaking $289,705.00 to lupus research, bringing our overall total to $1,377,324.00 since 1990.  Click here to learn more

SAPHNELO (anifrolumab) Approved by the FDA for SLE

 

LADA is excited to share that after eagerly waiting for a new drug to be approved to treat systemic lupus erythematosus (SLE), that on August 2nd, AstraZeneca 's SAPHNELO™ (anifrolumab-fnia) was approved by the US Food and Drug Administration (FDA) for the treatment of adult patients with moderate to severe SLE who are receiving standard therapy. SAPHNELO™ (anifrolumab-fnia) is a first-in-class type I interferon receptor antibody. The approval was based on efficacy and safety data from the SAPHNELO clinical development program, including two TULIP Phase III trials and the MUSE Phase II trial.

Click here to  learn more

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LADA Establishes Lupus Research Memorial Fund in Honor of Dr. Marc Chevrier

 

LADA has established the Marc R. Chevrier, MD, PhD, FACR Lupus Research Memorial Fund at the Rheumatology Research Foundation to honor the life and legacy of Dr. Marc Chevrier. Known as a pioneering researcher and passionate advocate for improving the care of people with lupus and other autoimmune diseases, Marc was fondly referred to as Papa Lupus by the patient community. He was devoted to his loving family and many lifelong friends.  Click here to  learn more

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LADA Engages with ICER on Lupus Nephritis Treatments Review

 

LADA actively engaged with the Institute for Clinical and Economic Review (ICER) to ensure that our unique viewpoint regarding the lupus patient journey was both included and understood during their 2021 value assessment of belimumab (Benlysta®, GlaxoSmithKline) and voclosporin (Lupkynis™, Aurinia Pharmaceuticals), two recently FDA-approved lupus nephritis drugs, in assessing their clinical effectiveness and value for the treatment of lupus nephritis. 

Click here to  learn more

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Lupus Education Symposium and Luncheon Road Show

 

Our Lupus Education Symposium & Luncheon is hopefully going on the road again in 2022 scheduled to be held in Detroit on March 26th, in Boston on April 9th, and Brooklyn on April 30th. The programs will feature clinical research experts, people with lupus and their loved ones discussing lupus research, patient journeys and perspectives, healthcare access, and care partnering. Exhibit booths and resources will also be available. 

Click here to learn more

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Coronavirus COVID-19 Crisis

 

As an organization led by people with lupus and allied diseases and their loved ones, many of whom are immunocompromised, we know firsthand the challenges faced as we struggle to manage our conditions as well as to access current, accurate and reliable information during the COVID-19 crisis. We want to ensure you that your safety and the well-being of the community is our primary concern.  Click here to learn more 

 

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Lupus Awareness License Plates

If you have a registered vehicle in New York state you can now order lupus awareness license plates for an additional fee that will promote much-needed lupus awareness while also supporting lupus education and research. The lupus awareness plate project was initiated by New York Senator Kevin Parker and Assembly Member Crystal Peoples-Stokes through their sponsored legislation in 2017. 

Click here to learn more