Why inflamed.community exists

AS — ankylosing spondylitis — is a chronic inflammatory arthritis. It causes pain, stiffness, and over decades, in some people, the slow fusion of the spine. It is also systemic. The same inflammatory machinery that hardens the spine causes gut disease in 60 per cent of patients, eye inflammation in roughly a quarter, and skin disease in a sizeable minority. It runs in families. It often appears in early adulthood. And it is invisible — to the people who don’t have it, and often to the doctors of the people who do, for years.

Despite affecting roughly one in two hundred people, AS sits in a strange research gap. The disease is too uncommon to attract the volume of attention that rheumatoid arthritis or IBD does. It is too common to qualify as rare in the senses that unlock orphan drug funding. The research is moving — 2024 and 2025 saw genuine progress on genetics, gut-immune mechanisms, and new drug classes — but the output is scattered across journals patients cannot read and clinical guidelines that take five years to update.

This site is a small attempt to close the visibility gap. It does three things at once: it maps the research literature for a non-specialist audience, it tracks new papers automatically each month, and it collects experience data from people living with the disease so the community can see itself.

How it works

The privacy posture, in plain terms.

The patient form does not ask for your name, email, or anything that identifies you. The web server discards your IP address rather than logging it. The dashboard suppresses any data point where fewer than five people contribute, so individual responses cannot be inferred. Every submission gets a one-time code that you can use to remove your row at any time within 48 hours. The code is the only thing that links to your row.

Why all of this. Health data is sensitive, and the people most likely to be helped by a registry like this are also the most likely to be let down by registries that take this lightly. The site is built so that re-identification of an individual is structurally impossible, not just unlikely. The full privacy approach is detailed at /privacy.

Who runs this

One person.

The platform is built and maintained by Brett — a developer in Queensland, Australia, with no clinical training. AS affects people close to him, which is the only credential the project has and the only one it claims. There is no organisation, no investor, no clinical sponsor, and no commercial entity. The architecture is small enough for one person to run, and the project will stay that size deliberately.

The editorial calls — what gets onto the map, how a paper is summarised, when a community submission is approved — are made by that same one person. There is no peer-review board. There is also no paid advertiser. Both are intentional.

What’s next

Phase 1 — the patient registry, dashboard, research map, community contribution form, and automated literature tracker — is what’s live. Phase 2 adds blood marker fields to the form, a drug cycling tracker that visualises which medications people move through and why, a symptom timeline tool patients can take to their doctor, and a monthly email digest of new papers. Phase 3 is translations — Spanish and French — and partnerships with academic institutions interested in the dataset.

There is no fixed timeline. Build time is measured in evenings and weekends. If you want to know what’s been added recently, the homepage and the changelog are the source of truth.

Support

Why donations exist on this site.

The platform has running costs — a domain, hosting, a small monthly bill for the API that summarises new papers in plain language. They are not large, but they are real, and they are paid out of pocket. If you find the platform useful and want to help cover those costs, the Buy Me a Coffee link below is how.

Donating does not give you any special access, influence, or data. Nothing is paywalled. There is no “supporter tier.” There are no ads. The platform is free for you whether you donate or not, whether you donate once or every month, and whether you donate two dollars or two hundred. The only thing it gives you is the warm feeling of having helped keep something going that you found useful, which is, in this context, the right amount of incentive.

Support inflamed.community on Buy Me a Coffee →

Contact

Reach me at contact@inflamed.community.

A real person reads this address. Replies usually arrive within 48 hours. Removal requests, research suggestions, errors you’ve spotted, or questions about the dataset — all welcome. The project has no support queue and no autoresponder system. Just one inbox.