Abstract
<title>Abstract</title> <p>Rare and autoimmune diseases affect an estimated 25 to 30 million Americans. However, research funding for these conditions often does not reflect the burden they place on patients, families, and healthcare systems. I believe that NIH research funding for rare and autoimmune diseases does not match patient burden. I can also measure this gap using a reproducible scoring framework. I created RareLens, an open-access platform available on the web and iOS. It combines data from the NIH Reporter API, PubMed E-Utilities, and ClinicalTrials.gov to calculate three scores for each disease. These scores are: a Research Score (R), which looks at NIH funding and publication volume; a Patient Burden Score (B), based on prevalence and quality of life; and a Gap Score (G = max(0, B - R)), which serves as the main equity measure. When I applied this framework to a reference catalog of 47 rare and autoimmune diseases, I found a strongly right-skewed distribution. Twenty-five out of the 47 diseases (53%) had a Gap Score of zero. Meanwhile, there was a concentrated tail that showed significant neglect. POTS (dysautonomia) had the highest Gap Score (G = 61; B = 74, R = 13), receiving only $397,440 in identifiable NIH grants from 2015 to 2026, which translates to about $0.35 per patient per year. Ehlers-Danlos Syndrome (hypermobile type) had the second highest Gap Score (G = 40). Systemic Lupus Erythematosus received the most research funding relative to its burden (R = 95). These findings support our belief that NIH funding does not align with patient burden in this catalog. They also provide an open and reproducible tool for advocating for research equity.</p>