Enhancing lives by engaging, enlightening, empowering, and elevating the lupus and allied diseases community!
Lupus and Allied Diseases Association, Inc., is dedicated to improving the quality of life for people with lupus and allied diseases and their loved ones by:
Wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research program initiatives.
Promoting patient-centered care, patient-focused research and empowerment programs.
Fostering collaboration among healthcare stakeholders and promoting unity in the lupus community.
Ensuring that the patient perspective is included and recognized as an equal stakeholder in the healthcare, public policy and regulatory arenas, and across the research continuum.
Supporting lupus and autoimmune research that will identify causes, advance better diagnostics, and lead to the discovery of superior treatments and ultimately, cures.
As an organization led by individuals with lupus and allied diseases and their loved ones, we understand the isolation and fear people often feel when they are first diagnosed with any condition. We also recognize the impact disease can have on other family members, loved ones, and caretakers. Our public education and advocacy programs are designed to empower people with lupus to actively participate in their own health care to hopefully improve disease outcome and enhance their quality of life.
We are also committed to increasing community awareness and program revenues by focusing public attention on lupus and other diseases of unmet need. We realize that early diagnosis and treatment are vital components in reducing the physical and economic impact of chronic disease. Our organization strongly supports increased research funding that will enable scientists to identify causes, develop faster diagnostic measures, safer, more effective treatments, and discover cures.
All of us here at the Lupus and Allied Diseases Association, Inc., are proud to support strong lupus and autoimmune research programs and have provided $1,848.324.00 overall in research funding to date. We have donated $981,050.00 to the Lupus Research Alliance (LRA) in the past 20 years. The LRA has made tremendous strides in the lupus and autoimmune research community with many of their initial grants now receiving NIH funding. We are extremely proud of our ongoing support of the LRA.
We are now also supporting the Lupus Foundation of America's (LFA) Pediatric Research Program beginning in 2017 with a $25,000.00 grant and $100,000.00 in 2018, 2019, 2020 and 2021 with $50,000.00 for their promising Pediatric Research Program in partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and $50,000.00 to Dr. Gary Gilkeson for his Mesenchymal Stromal Stem Cell Research Program this equals $503,569.00 since 1990. In 2022 we funded an additional $50,000.00 grant to Dr. Gilkeson.
In 2021 we expanded our research program to also include $25,000.00 to Dr. Maria Kontaridis and the Masonic Medical Research Institute (MMRI) Team to provide additional support for their DOD Lupus Impact Award Research Project on the Pathogenesis of Lupus. In 2022 we funded 3 separate novel research projects totaling $150,000.00. Since we previously supported lupus research at the Institute from 1990 to 2000, this brings our total research support amount to $215,000.00 to MMRI. We love the fact that lupus research is back in the Mohawk Valley.
We also established the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at The Rheumatology Research Foundation earlier this year. This Fund honors the life and legacy of Dr. Chevrier, a pioneer and patient advocate in the lupus field, and dear friend to us at LADA. The fund will support lupus research funded within the Foundation’s preceptorships program and has grown to $74,705.00 since inception. Research has become our beacon of hope, brightly shining in the stormy seas of lupus.
In July, we donated $70,000 to support the Pediatric Lupus Research Program at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) for two novel pediatric lupus projects.
Lupus and Allied Diseases Association, Inc., provides representation regarding important lupus and allied diseases advocacy initiatives at state and national events. Our participation in these forums puts a face on these conditions and provides a critical voice while making a positive difference in the lives of others.
Education & Awareness
Telephone hotline and local county Physician Referral List
Informational brochures LADA Brochure
Annual Newsletter and national publications
Annual 2020-2022 Lupus Communique
Annual 2019-2020 Lupus Communique
Annual 2018-2019 Lupus Communique
Annual 2017-2018 Lupus Communique
Annual 2016-2017 Lupus Communique
Annual 2015-2016 Lupus Communique
Annual 2014-2015 Lupus Communique
Annual 2013-2014 Lupus Communique
Annual 2012-2013 Lupus Communique
Online webinars by medical professionals
Up-to-date treatment and research information
Patient empowerment resources*
NYS DOH Healthcare Proxy
Personal Medical Information
Communication and Empowerment Tool
Advocacy & Research
Participation in state and federal public policy issue events
Advocacy for public policies to increase federal program funding
Advocacy for public policies to improve patient access on healthcare issues
Advocacy on regulatory, legislative and research issues
Advocacy for better policies for government-funded assistance programs
Clinical trial information and participation opportunities
Current research information
Representation at Education and Scientific Meetings
*Special thanks to Team LUPUS participants for developing our patient empowerment resource materials: Kathleen & David Arntsen, Sandi Frear from Lupus and Allied Diseases Association and Honi Kurzeja & Judith Anderson from Lupus Alliance of Upstate NY.