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Enhancing lives by engaging, enlightening, empowering, and elevating the lupus and allied diseases community!

Our Programs

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.

  • Engaging with other stakeholders and organizations to prioritize and accelerate lupus research and drug development such as academia, non-profit research, patient and provider organizations, individuals with lupus and their loved ones, the biopharmaceutical industry, and federal and state public officials.

  • Collaborating with patient and care partner experts to share their viewpoints with other stakeholders on clinical trial methodology such as trial design, PROs, informed consent, endpoints, benefits vs. risks assessments, decentralization, recruitment, patient education materials, and treatment value.

  • 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 care partners. 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 $2,352,838.73 overall in research funding to date.

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. 

 

As a passion driven, patient advocacy organization that is actively engaged on important healthcare public policy issues on both the federal and state levels because lupus is a disease of unmet need with limited effective therapies that are accessible to those who need them most. We recognize that once a therapy is approved, it does not necessarily mean that it will be accessible. In addition, we understand that appropriate treatment is highly individualized for people struggling to manage conditions like lupus, especially given the unpredictable course of the disease and additional renal, neurological and cardiovascular complications. Therefore, maintaining disease stability by having access to the full array of therapies is critical to patient well-being. We have a long-standing reputation for aggressively pursuing stronger patient protections and driving research and development forward with the patient and care partner stakeholder at the table as an equal participant.


As an organization led by patients and loved ones who experience the healthcare and clinical research systems firsthand, we are uniquely positioned to provide a true patient perception regarding quality of life, value, outcomes, and treatment benefits vs. risks. We confront healthcare issues as they arise, often taking the lead to organize grassroots efforts within the nation or states; boldly inserting ourselves into the regulatory, legislative, and research communities whenever necessary to guarantee a patient perspective is both included and heard.

Our Services

 

Education & Awareness 

  • Telephone hotline 

  • 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  
    

ADVOCACY

  • 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 
     

                          

RESEARCH

  • 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.

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