coalitions

  • 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

advocacy

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. 


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. 

Research

  • 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
  • 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, inconsistencies 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.  Learn more



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.  Learn more


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.  Learn more

From IFAA's co-founders to several of our volunteers, we have been the patients "at the table", using our voices as persons diagnosed with these diseases to influence research.  This experience has enabled our team to develop and lead our own research initiatives.  ​Featured projects include:

In conjunction with our own experiences as people diagnosed with these diseases, and through conversations with and stories collected from others affected, we develop awareness and educational materials.  Some of these projects aim to educate the public about our diseases, while others serve to educate patients about important issues.  Feature projects include:

Education/awareness


  • 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.  This project will be relaunched in 2018 and all results used to develop educational materials to promote early detection, referrals, and diagnosis.  Learn more

We use our personal experiences living with these diseases, in conjunction with testimony from others diagnosed, to advocate for the most pressing healthcare issues internationally that affect our population.  In addition to collaborating with other nonprofits on important issues, we also focus strongly on utilizing research to influence policyFeature project:

projects