There are over 7,000 known rare diseases affecting 300+ million people worldwide. 95% have no approved treatment. And when I searched GitHub for tools to help โ I found almost nothing.
Complex Regional Pain Syndrome is a chronic pain condition that typically affects a limb after injury or surgery. It's ranked among the most painful conditions known to medicine. It affects over 200,000 people in the US alone.
And yet, the average time to diagnosis is over two years.
Two years of being told it's in your head. Two years of being bounced between specialists who don't recognize it. Two years where early intervention โ the single most important factor in CRPS outcomes โ is slipping away.
Why? Because CRPS is rare. And rare means there's no money in it. No pharmaceutical company is racing to build tools for a condition that affects "only" hundreds of thousands of people.
I searched GitHub thoroughly for CRPS-related tools, datasets, or diagnostic aids. Here's what exists:
One abandoned Java diagnostic tool from 2016. One dead awareness website from 2019. One research code repo. A few READMEs that mention CRPS in passing.
That's it. Zero active open-source tools. Zero symptom trackers. Zero diagnostic aids. For a condition that takes years to diagnose and has well-established clinical criteria.
The good news is that CRPS has a validated, internationally accepted diagnostic standard: the Budapest Clinical Diagnostic Criteria, adopted by the International Association for the Study of Pain in 2012.
The criteria evaluate four categories: sensory, vasomotor, sudomotor/edema, and motor/trophic. They're well-documented in medical literature. But they're buried in academic papers that most patients will never read.
The CRPS Budapest Criteria Assessment Tool walks users through all four criteria categories. It distinguishes between symptoms and signs, provides a clear assessment, and explains everything in plain language.
It's 100% private. Everything runs in the browser. No data is sent anywhere. No accounts. No tracking.
This tool does not diagnose CRPS. Only a qualified healthcare professional can do that. What it does is help patients understand the criteria, assess where they stand, and walk into a doctor's appointment armed with better information.
This is my first project, not my last. CRPS is one of over 7,000 rare diseases, and the gap in open-source tooling is enormous. The code is on . Contributions welcome.
Nobody's going to get rich building open-source tools for rare diseases. That's exactly why I'm here.