Amplifying the Patient Voice
throughout the healthcare, regulatory and public policy arenas and across the research continuum!
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.
LADA Engages with ICER on Lupus Nephritis Treatments Review
LADA has been actively engaging with the Institute for Clinical and Economic Review (ICER) since August to ensure that our unique viewpoint regarding the lupus patient journey was both included and understood during their current review 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
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
LADA President & CEO Featured in Lupus Nephritis Drug Launch
LADA President & CEO Kathleen A. Arntsen was featured in the press release and video launch announcing the FDA-approval of voclosporin (Lupkynis™) developed by Aurinia Pharmaceuticals for the treatment of adult patients with active lupus nephritis on January 22, 2021 and in the video media tour on February 24, 2021 sharing her patient and advocacy organization leader perspective on the significance of the drug's approval. Click here to learn more
Lupus Education Symposium and Luncheon Road Show
Our Lupus Education Symposium & Luncheon is going on the road again in 2021 in Boston on October 2nd, Detroit on October 16th, and Brooklyn on October 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
Lupus Community Advocacy Victory
We are thrilled to share that on December 27, 2020, President Donald J. Trump signed into law a fiscal 2021 spending package that includes $21.5 million in new funding specifically for lupus research and education programs. The package also includes $42.9 billion for biomedical research through the National Institutes of Health (NIH). Click here to learn more
Lupus Charity Golf Classic
LADA's 21st Annual Lupus Charity Classic will be held on Thursday, August 19, 2021 at scenic Shenendoah Golf Course at Turning Stone Resort in Verona, NY. The golfing, lunch and dinner may be modified to include mandatory face masks and social distancing as safety precautions due to COVID-19. Last year's event was a great success, making over $105k for our programs. Click here to learn more
Coronavirus COVID-19 Crisis
As an organization led by people with lupus and allied diseases and their loved ones, 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
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 supporting lupus education and research. The lupus awareness plate project was initiated by New York Senator Kevin Parker and Assemblymember Crystal Peoples-Stokes through their sponsored legislation in 2017. Click here to learn more