AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.
About this Research

This research is the final part of a bigger collaborative project between our organization, Purple Playas Foundation, and the American Autoimmune Related Disease Association (AARDA), called Knowledge is EmPOWERment. This last initiative is to explore some rare, "atypical", and hard-to-treat autoimmune and autoinflammatory diseases with arthritis as a major clinical component to identify patterns as to why some diseases are harder to treat than others.  Those who do have hard-to-treat disease often experience poorer outcomes, higher healthcare costs, and may exhaust existing treatment options. 

The voice of those living with these diseases is POWERful; sharing your experiences will help us develop materials educational materials we hope will aid in early detection, diagnosis, and access to care for the atypical, hard-to-treat population.  

Problem

People diagnosed with Autoimmune or Autoinflammatory diseases that have arthritis as a major clinical component (AiArthritis), often face challenges that lead to delays in diagnosis, misdiagnosis, re-diagnosis and multiple diagnoses. This can cause treatment complications, resulting in poorer outcomes and inflated long-term healthcare costs. 

Some of these diseases, like Adult Onset Still's Disease (AOSD), are considered "rare", while others, like Rheumatoid Arthritis (RA), are considered more common; however, in our internal research, and through continued dialogue with a global patient community, we have identified that many patients do not match the classic disease descriptions as outlined in mainstream publications ("typical" versus "atypical"). Therefore, in addition to delays in detection and diagnosis, we believe it is important to further explore relationships between "rare" versus "common" diseases, as well as "typical" versus "atypical" presentation, to explore how these subsets affect disease progression and outcomes and why some diseases may be harder to treat than others.

The results from this research will be used to further our work to advocate in favor of early detection, diagnosis, and access to care.


Thank you for helping us fight hard-to-treat AiArthritis disease!

For those who participated in our survey, thank you!  We are currently analyzing the results and will distribute the findings as they become available.
This study was made possible with support from Enzyvant pharmaceutical company, as part of a larger collaborative initiative between IFAA, AARDA, and Purple Playas Foundation, called the "Knowledge is Empowerment" series. Funding will be used to cover the costs of developing and designing the study, including analysis and reporting.
  
DIsclaimer: This project was designed, led, and data will be collected and shared between International Foundation for AiArthritis, AARDA, and Purple Playas Foundation. At no time do our pharmaceutical sponsors gain access to our raw data, nor do we permit them to guide or influence our work.
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