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.

  • 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 $764,000.00 overall in research funding to date. We have donated $491,000.00 to the Lupus Research Alliance (LRA) in the past 18 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 grant and $100,000 in 2018 and 2019 for mesenchymal stem cell and pediatric lupus research. Research has become our beacon of hope, brightly shining in the stormy seas of lupus. 

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. 
 

Our Services

 

Education & Awareness 

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 the LRA Annual Scientific Meeting

 


*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.

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY  13478

 

Phone 315-829-4272
Fax 315-829-4272

Toll free 1-866-2-LUPUS-4

e-mail -  Info@LADAinc.org

© 2018 ALL RIGHTS RESERVED, LUPUS AND ALLIED DISEASES ASSOCIATION, INC.