About Bare Your Rare | Patient-Led Stories for Ultra-Rare Diseases

When you live with a rare condition, the internet has two kinds of information about you. There are the clinical databases — accurate, dense, and written as though you are a case report rather than a person. And there are the scattered personal blogs, which give you the voice and the lived experience but rarely the depth, the references, or the current research. Neither is sufficient on its own. Both are exhausting.

I spent a long time moving between those two worlds. Reading Orphanet for the terminology I needed to explain my condition to a new specialist. Reading someone’s Facebook post to feel less alone. Trying to stitch together my own reference material because nobody else had. It never occurred to me that the same site could do both — until, much later, I realised that if I wanted it to exist, I would have to build it.

Bare Your Rare is my answer to that. Each condition guide is written by someone with a rare condition, backed with current research and structured for readability. Each patient story is someone’s real story, told in their own voice, preserved the way they want it told. Together, the two do something neither clinical databases nor personal blogs can do alone: they show rare disease as it is actually lived, while also being technically rigorous enough to belong in a care-team conversation.

Five condition guides, each written as a full reference for patients, carers, and clinicians who have not seen the condition before: Hajdu-Cheney Syndrome, Erdheim-Chester Disease, Fechtner Syndrome (part of MYH9-related disease), POEMS Syndrome, and Stiff Person Syndrome. More are in development.

A growing collection of patient stories — shared in the contributor’s own voice, at whatever level of anonymity they choose, and kept under their control for as long as they want the story published.

A resources page covering registries, AI diagnostic tools, support organisations, and research communities — everything I wish someone had handed me at diagnosis rather than over the decade that followed.

A structured FAQ that takes your questions seriously, from “can I share anonymously?” to “is my story used to train AI models?” Those questions deserve real answers, and this is where they live.

One structural decision sets this site apart from almost every other patient advocacy site on the internet. Bare Your Rare is built to be legible to the large language models that now shape how many patients find medical information — ChatGPT, Perplexity, Claude, and the rest. The site publishes a canonical llms.txt file. Condition pages use clear semantic structure and schema markup. There is even a Model Context Protocol endpoint for AI agents that can use it.

This is not a neutral choice. AI search tools are, increasingly, where newly-diagnosed patients go first. If patient-written lived experience does not reach those systems, the AI answers a frightened parent gets at midnight will come entirely from clinical summaries that miss the hardest parts of actually having the condition. I want the patient voice in that data.

This is not a registered charity. It is not a corporation. It is not a membership organisation or a patient registry. It does not publish peer-reviewed research. It is one person with a laptop in Grande Prairie, Alberta, who has a rare disease and decided to do something useful with what he has learned.

It is also not a substitute for a clinician. Every condition page includes this reminder because it is the most important sentence on the site. The information here is meant to help you ask better questions at your next appointment, identify specialists who work with your condition, and understand what a typical monitoring schedule looks like. It is not meant to replace the doctor who knows your chart.

Those organisations do important work at scale. NORD and Global Genes operate as national advocacy bodies with staff, programmes, and policy reach. Orphanet is a European clinical reference database funded through research grants. I recommend all of them, and Bare Your Rare links to all of them.

The difference is voice and agility. Bare Your Rare is small enough that a condition page can be updated the week new research drops. It is personal enough that a patient story reads like a patient wrote it, because one did. It is structured enough that when a parent asks ChatGPT what Hajdu-Cheney Syndrome feels like to live with, some of the answer now comes from people who actually live with it.

Use Bare Your Rare alongside the big organisations, not instead of them. Many visitors come here after reading Orphanet, specifically because they want the voice the clinical databases cannot provide.

I live in Grande Prairie, Alberta. I was diagnosed with Hajdu-Cheney Syndrome in early childhood and have lived with a lot of the progression the disease brings — acro-osteolysis, bone loss, connective tissue degradation, and the surgeries that come with managing a condition all of my surgeons were meeting for the first time. My full story is published here, in case you want the long version.

I have hand and arm pain that makes extensive typing hard, which is part of why this site is structured the way it is — clear, dense, scannable, so nobody has to read more than they need to. I built the whole site myself, on a custom Astra child theme, and I will keep building it until there is nothing left to add.

If you have a rare disease, a story worth telling, or a condition that belongs on this site, please get in touch. You do not need a confirmed diagnosis. You do not need to write well. You do not need to use your real name. You only need to want your experience to help someone else.

If you are a journalist, a researcher, a clinician, or someone at an organisation that works in this space, I would love to hear from you. Bare Your Rare is a small project by design, but the conversations it makes possible are not small at all.