• A Community Team (ACT) II - Redefining Research: Building on the award-winning Innovation in Research pilot project (ACT I), ACT II will build out the patient-industry-researcher collaboration platform tested in ACT I, expand to include all phases of pharmaceutical and non-pharmaceutical therapeutic development, and open participation to those diagnosed with Rheumatoid Arthritis and Systemic Lupus Erythematosus, in addition to the original participants (Psoriatic Arthritis, Ankylosing Spondylitis, Axial Spondylitis).  Research, Education, Research Advocacy*
  • ACTion Council and Working Group:  An extension from the Roundtable in the first ACT project, IFAA will join forces with top influencer stakeholders active in the patient-research collaborative space to form a Council, with subsequent Working Groups, who will take “action” to preserve the history of patient engagement and to track the evolution of collaborative practices as new parties enter the space so efforts are not duplicated, universal terminology is adopted, and the value of engagement can be collectively measured. Research, Education, Research Advocacy*
  • AIArthritis Voices: This educational website will launch June 2018, created for stakeholders interested in learning more about patient collaboration in research (rheumatology specific).  A private area of the site will be available  to those diagnosed with autoimmune or autoinflammatory diseases with arthritis as a major component who are interested in participating in discussions that aim to advance the patient voice in research.  All discussions will be led by patient advocates who manage IFAA.​ Research, Education, Research Advocacy*
  • #LearnArthritis This global awareness campaign aims to teach both the public and those in the medical community who are responsible for detecting early autoimmune and autoinflammatory diseases with arthritis as a major component to understand the differences between the arthritis associated with these diseases and the more commonly understood Osteoarthritis.  It will use an apple (Osteoarthritis) and orange (autoimmune/autoinflammatory arthritis) comparison to explain it is not the same. Advocacy/Awareness, Education
  • World Autoimmune & Autoinflammatory Arthritis Day:  Established in 2012 and hosted by IFAA, this event is designed in the form of an "auto" race, uniting dozens of nonprofits and patient advocates globally who work together to bring worldwide awareness to these diseases. Advocacy/Awareness
  • Media Awareness Hotline:  Report inaccurate information published or reported about autoimmune or autoinflammatory diseases with arthritis as a major component in the media. Advocacy/Awareness, Education​
  • Still's Disease Awareness Day: In September 2017, the International Stills Disease Foundation dissolved.  IFAA has acquired all resources and programs, including becoming the official hosts of Stills Disease Awareness Day annually on September 7th. Advocacy/Awareness

upcoming projects

The International Foundation for Autoimmune & Autoinflammatory Arthritis (IFAA)was founded by and is led by persons living with the diseases we represent.  No one is a better expert on these diseases, or the most critical issues those diagnosed with them face, then the people living with them every day.   We use our experience as patients, as well as our professional backgrounds in business, education, and research, to identify projects that will benefit our mission to maximize the patient voice to influence advocacy, education, and research. 


We are strongly project based.   Like traditional nonprofits, we do ongoing work to support our mission, including advocating for patient access to appropriate disease management and supporting innovation and advancement in research.  However, since we use our roles as patients to constantly identify the most pressing, unresolved issues, our work often is "action-oriented", requiring projects that have specific goals and outcomes.


Global Network.  In all work we do, we join forces with others affected by these diseases, in conjunction with a "global network" of collaborators, to establish the best team for implementation, per project. 

http://www.stillsdisease.org/index.php/stillsdiseaseawarenessday/
  • Biosimilars Education:  Video lessons, hosted by IFAA, MedIQ, and ProPatient, using the patient voice to help other patients understand the basics of biosimilar drugs (2016). Education
  • Coalitions:  We are members of over two dozen coalitions (some international), where we join other nonprofits who unite to advance awareness, advocacy, education, and research in our communities.  Most of these coalitions focus on access to treatments, step therapy, non-medical switching, and biosimilars.  Advocacy/Public Policy
  • A Community Team (ACT) - Redefining Research: 2015 Innovation in Research award-winning pilot project to develop a new communication platform to elevate patient-industry-researcher dialogue in early drug development by placing patient advocates in leadership roles, with research professionals as advisors. In the final phase, an international Roundtable - attended by stakeholders identified as key influencers in the patient-research collaborative arena, united to identify outstanding barriers and benefits, dinconsistencies in terminology and methodology, and the need for future collaboration to avoid a duplication of efforts and ensure value can be measured. Diseases included Psoriatic Arthritis, Ankylosing Spondylitis, Axial Spondyloarthropathy. Research
  • Early Symptoms of Autoimmune Arthritis Study: IFAA compared patient-reported early disease symptoms from patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, Sjogren's Syndrome, Systemic Lupus Erythematosus, and Adult Onset Still's Disease, with symptoms published on websites at the National Institutes of Health, Mayo Clinic, and American College of Rheumatology (2013) and additional disease indicators as noted by nonprofit advisors.  Research, Education, Awareness
  • Ethics of Step Therapy Policy and Research Advocacy:  Based on ethical evaluations from two bioethicists regarding insurer and practitioner ethical responsibilities in healthcare, in conjunction with an internal investigation into the history of step therapy practices in the United States, IFAA noted that while insurers have an ethical obligation to recommend use of the lowest cost therapy prior to approval of a higher cost prescription, they justify this by citing credible research that demonstrates safety and efficacy in general patient populations.  However, IFAA's CEO realized most patients are not 'typical', so when they do not meet the same disease criteria used to test their recommended therapies, practitioners - who have an ethical responsibility to treat to the unique characteristics of their patients - should be able to trump step therapy practices.  Advocacy/Public Policy


* "Research Advocacy" is a term for projects where the research can be used to influence legislation.

current projects

projects