There are approximately 10,888 rare diseases in the MONDO ontology. A handful get consistent attention: Duchenne, CF, sickle cell, a few dozen others with well-funded patient advocacy groups and active pharma pipelines. The rest exist in a kind of informational silence. Trials open and close. FDA designations are granted. Policy changes happen at the state level. And nobody is tracking it in one place, in real time, in a way that's actually usable.

I know this because I spent years working in IT at NORD, the National Organization for Rare Disorders. I watched how the information flowed, and more importantly, where it didn't. A PAG leader running a foundation for a disease that affects 500 people in the U.S. does not have the staff to monitor ClinicalTrials.gov, track FDA orphan drug designations, follow state newborn screening legislation, and also run their organization. Nobody does that manually. And until now, nobody's infrastructure did it automatically.

That's what KISHO is. Not a search engine. Not a chatbot. A continuous rare disease intelligence platform that monitors clinical trials, news, FDA activity, policy changes, genetic data, and patient resources across all 10,888+ conditions, grounded in open science and structured around the MONDO ontology.

I want to explain what I mean by "no one watching," because it's more specific than it sounds.

The trial that opened and nobody knew. A Phase 2 trial for a rare metabolic condition opens enrollment in Ohio. The relevant PAG is based in Maryland. Their executive director finds out six weeks later from a parent in a Facebook group. By then, half the enrollment slots are filled. This happens constantly. Not because people aren't paying attention, but because the infrastructure to surface that information in real time, to the right people, doesn't exist.

The policy vote that passed in silence. A state legislature expands its newborn screening panel to include a new condition. The PAG that spent three years lobbying for it knows. The PAGs for the 15 other conditions on that panel who might benefit from the precedent? They find out months later, if ever. There's no system that connects a bill's passage in one state to the advocacy strategies of organizations working on related conditions in other states.

The orphan drug designation nobody connected. The FDA grants an orphan designation to a compound. That designation is public record. It's on the FDA website. But connecting it to the specific disease, the existing trial pipeline, the gene targets involved, the PAGs tracking that disease, and the competitive landscape of other designations in that therapeutic area? That requires structured, linked data. A PDF on the FDA website doesn't give you that.

These aren't hypotheticals. These are Tuesday.

KISHO was built to close these gaps. Every disease page on the platform pulls from ClinicalTrials.gov, PubMed, FDA databases, HGNC gene data, ClinVar pathogenic variants, ClinGen validity scores, HPO phenotype mappings, news sources, and policy tracking systems. The data is structured, linked, and continuously updated on independent schedules. When something changes for a disease, KISHO knows, and the people who need to know can be alerted in real time.

I'm building this as a solo founder in Woodbury, Connecticut. I have two adopted brothers with rare genetic conditions. That's the personal reason this matters to me. But the professional reason is simpler: this infrastructure should exist and it doesn't. The rare disease community deserves the same quality of intelligence infrastructure that pharma companies build internally for their own pipelines. KISHO is the attempt to make that available to everyone, from a caregiver searching at midnight to an enterprise medical affairs team running competitive analysis.

This blog, Rare Signal, is where I'll write about what we're building and why. Product decisions, data architecture, the rare disease landscape, policy changes, and the honest version of what it's like to build a platform like this from scratch. No marketing polish. No "we're thrilled to announce." Just what's true, what's working, and what's next.

If you work in rare disease in any capacity, I'd like this to be useful to you.