Abstract
<title>Abstract</title> <p>Objective Rare and autoimmune diseases affect an estimated 25 to 30 million Americans, yet research funding often does not reflect the burden they place on patients and healthcare systems. The objective was to test whether NIH funding is proportional to patient burden across these conditions and to quantify any disparity reproducibly. I built RareLens, an open-access web and iOS platform drawing on the NIH Reporter API, PubMed E-Utilities, and ClinicalTrials.gov to compute, for each of 47 catalog diseases, a Research Score (R; NIH funding and publications), a Patient Burden Score (B; prevalence and quality of life), and a Gap Score (G = max(0, B - R)), the primary equity measure. Results 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). NIH funding was not proportional to patient burden across this catalog. RareLens provides an open, reproducible tool for research equity advocacy.</p>