TheRareLens: a quantitative framework for identifying research funding disparities in rare and autoimmune diseases relative to patient burden

Rare and autoimmune diseases affect an estimated 25 to 30 million Americans, yet NIH research funding does not consistently match the burden they place on patients. I built TheRareLens, an open-access web and iOS platform using the NIH Reporter API, PubMed E-Utilities, and ClinicalTrials.gov to compute a Research Score (R), Patient Burden Score (B), and Gap Score (G = max(0, B - R)) for 47 catalog diseases. The objective was to test whether NIH funding is proportional to patient burden across these conditions and to quantify any disparity reproducibly. Gap Scores were strongly right-skewed. Twenty-five of 47 diseases (53%) had a Gap Score of zero, while a concentrated tail showed substantial neglect. POTS (dysautonomia) had the highest Gap Score (G = 61; B = 74, R = 13), with only $397,440 in identifiable NIH grants from 2015 to 2026, about $0.35 per patient per year. Ehlers-Danlos Syndrome (hypermobile type) ranked second (G = 40), and Systemic Lupus Erythematosus was the most research-proportionate disease ( R = 95). Within this 47-disease catalog, Patient Burden Score (B) was a weak predictor of Research Score (Spearman rho = 0.24, p = 0.099). TheRareLens provides an open, reproducible tool for identifying these gaps and advocating for research equity.