TheRareLens

RareLens: Research Equity for Rare Diseases The Problem Over 7,000 rare and autoimmune diseases exist but fewer than 5% have an approved treatment. Research funding from the NIH often doesn't reflect how many people a disease affects or how severely it impacts their lives. Patients wait years for a diagnosis. Researchers don't know where the biggest gaps are. Advocates don't have the data to make their case. RareLens changes that. Who It's For — Patients and caregivers who want to understand where their disease stands in the research landscape — Scientists and clinicians looking for high-impact, underserved areas to direct their work — Patient advocates building the case for more funding — Students and researchers exploring rare disease epidemiology and health equity How It Works RareLens pulls live data from NIH Reporter, PubMed, and ClinicalTrials.gov to score every disease across two dimensions: • Research Score: how much NIH funding and published science exists for a disease • Patient Burden Score: how prevalent the disease is and how severely it affects quality of life The difference between the two is the Gap Score a single number that tells you exactly how underfunded a disease is relative to the burden it places on patients. Features — Live gap scores and funding trends for rare and autoimmune diseases — Disease profiles with NIH funding history, active clinical trials, and recent publications — Year-over-year funding change tracker to catch emerging shifts in research investment — Bookmark and track the diseases that matter to you — Search any disease, even one not in our catalog and get a full score within seconds The Science Behind It Every score is formula-based, sourced from public government data, and fully reproducible. RareLens was built on a peer-reviewed methodology grounded in NIH Reporter, Orphanet prevalence data, and the Global Burden of Disease Study 2021. This is not a curated list. This is a live, data-driven map of where science is and isn't showing up for patients.