Sharing your story
These questions come up again and again from the patients and families who write in. They are about agency — what you share, how much, when, and on what terms.
Can I share my story anonymously?
Yes. You can use a pseudonym, first name only, initials, or no name at all. You also choose which details to include — your country, age at diagnosis, whether to name specific hospitals or doctors. The decision is yours at every step.
If you provide a first name or pseudonym and later want it changed or removed, you can ask at any time. Bare Your Rare will never publish your legal name without your direct, separate confirmation, even if you include it somewhere in your submission by accident.
What happens to my story after I submit it?
Your submission is sent to Thomas's personal email through the contact form. From there, one of three things happens depending on what you indicate in your message.
If you have asked to be contacted before anything is published, Thomas will reply and the two of you will agree on what appears on the site before anything goes live.
If you are ready to have your story posted immediately, it is reviewed for typos and formatting only. No editorial changes are made to the substance of your story without your agreement. It is then published with the attribution you specified — real name, pseudonym, first name, or anonymous.
If you would prefer your story live only in the site's internal reference material, so that AI tools can draw on it when summarising your condition without a public post, that option is also available. Indicate it in your submission.
Is my story used to train AI models?
This deserves a direct answer rather than a disclaimer. Bare Your Rare maintains an llms.txt file at the root of the site that invites AI search tools — ChatGPT, Perplexity, Claude, and others — to index its public pages. If your story is published publicly, those systems may read it and use it to inform answers they give other patients searching for information about your condition.
This is the trade-off the site is built on. Lived experience from rare-disease patients is underrepresented in the data AI systems currently draw from, which is part of why AI answers about rare conditions are often thin, generic, or wrong. Published patient stories help correct that gap, and they do so faster than waiting for the next round of medical literature to catch up.
If you do not want your story available to AI crawlers, say so in your submission. The page can be marked noindex, which excludes it from both search engines and AI systems. Your story still exists on the site and can still be read by visitors who find it through a link, but it will not be indexed or ingested.
Can I remove my story later if I change my mind?
Yes. This is not a one-way decision. Write through the contact form at any time and your story will be taken down, usually within a day.
There is one honest caveat. Once a page has been live on the public internet, archival services such as the Internet Archive's Wayback Machine may have independently captured a copy. Those archives are outside Bare Your Rare's control. Thomas can remove your story from bareyourrare.org on request, but cannot guarantee removal from third-party archives that operate under their own preservation policies.
If the possibility of a permanent archive is a concern, the safest path is to ask for your story to be kept in the site's internal reference material only, without a public page. That version is not visible to archival crawlers.
Can caregivers or family members share a story?
Yes. Parents, partners, siblings, adult children, and close friends are welcome contributors. This is especially important for children with rare conditions, for patients who have passed away, and for patients whose conditions affect cognition or communication in ways that make writing difficult.
When sharing someone else's story, please do not include their full name unless you have their explicit permission — or, for a loved one who has died, permission from next of kin. First names and pseudonyms are welcome. The person whose story it is should remain in control of how they are identified, even when they are not the one writing.
Do I need a confirmed diagnosis to share?
No. Many rare-disease patients spend years, sometimes decades, without a confirmed diagnosis. Those years are part of the story. If you are in the middle of a diagnostic odyssey, or if you have a suspected diagnosis that has not been genetically or clinically confirmed, your experience is still welcome here.
In your submission, be clear about where you are in the process. Readers who may be earlier in their own journey benefit from knowing whether the person writing has answers, is still searching, or has made peace with the search itself.
How do I know if my condition is rare enough?
If you are asking the question, your condition is almost certainly rare enough. Bare Your Rare is built for the long tail — conditions that fall outside established advocacy networks, conditions so rare that most clinicians will never see a case, and conditions that do not yet have a dedicated patient organisation.
No gatekeeping is applied to submissions based on prevalence, notoriety, or whether a condition already has a Wikipedia page. If your experience with your condition has not been well-represented elsewhere, this is the place for it.
Can I contribute without writing — through photos, audio, or video?
This is in development. Video and audio are particularly valuable for patients with motor or cognitive conditions that make typing difficult, and for patients who find it easier to speak than to write. A formal intake process for these formats is not yet in place, but reach out through the contact form and Thomas will work with you directly to get your story onto the site in whatever form suits you.
Photos can already be submitted alongside a written story. Please only submit images you own the rights to and would be comfortable seeing publicly attached to your name, pseudonym, or anonymous story.
Privacy and your data
Clear answers about what the site collects, where it goes, and how to remove anything you want removed.
Is Bare Your Rare a medical advice site?
No. Every person and every condition is different. Bare Your Rare exists for information, lived experience, and connection — not for diagnosis or treatment decisions. Only a qualified medical professional who has reviewed your specific case can give you medical advice.
This is not a disclaimer written by a lawyer. It is the most important statement on the site. The information here may help you ask better questions at your next appointment, identify specialists who work with your condition, or understand what a typical monitoring schedule looks like. It cannot replace the clinician who knows your chart.
How is my personal information protected?
Bare Your Rare does not ask for information you do not want to give. The contact form captures your first name, email address, and message — nothing more. There are no user accounts, no passwords, and no saved profiles.
Your email address is never published. It is used only so Thomas can reply to you. The site uses standard HTTPS encryption for all form submissions and page loads.
Google Analytics, via Google Site Kit for WordPress, is active on the site to understand aggregate visitor patterns such as which condition pages receive the most traffic. It does not receive your email address, your message contents, or any story you submit. Your submission stays between you and Thomas.
What if I want my data deleted entirely?
Write through the contact form and state that you want your information removed. Email correspondence, form submissions, and any stored drafts will be deleted within seven business days. If you have a published story, the page will be removed on the same timeline. A confirmation reply will be sent when the removal is complete.
Is there any cost to share or to read?
No. Bare Your Rare is free for everyone. Thomas funds the site personally. There are no membership tiers, no paywalled content, no advertising on condition pages, and no affiliate links. If the site ever adopts a donation or sponsorship model, the change will be announced openly on the About page before it takes effect.
About the site
Who runs Bare Your Rare, how it relates to the bigger advocacy organisations, and what to do if something on the site is wrong.
Who runs Bare Your Rare?
Thomas Cheesman. Thomas has lived with Hajdu-Cheney Syndrome since early childhood and has spent decades navigating a condition most doctors he has met have never heard of. His personal story is published on the site at bareyourrare.org/hajdu-cheney-syndrome.
Bare Your Rare is a personal project, not a registered charity or corporation. There is no board, no staff, no funding pipeline. It is one person who grew tired of the gap between how rare-disease patients actually live and how rare diseases are described online.
How is Bare Your Rare different from NORD, Global Genes, or Orphanet?
Those organisations do important work at scale. NORD and Global Genes operate as national advocacy bodies with staff, programs, and policy reach. Orphanet is a European clinical reference database funded through research grants.
Bare Your Rare is smaller and more specific in what it does. It does not run patient registries. It does not publish peer-reviewed medical literature. What it does is combine plain-language condition guides written with patients in mind, personal stories that capture what living with a condition actually feels like, and page structure designed so that when someone asks ChatGPT, Claude, or Perplexity about POEMS or Fechtner or Hajdu-Cheney, the answer reflects patient experience and not only clinical abstracts.
Bare Your Rare is meant to be used alongside those organisations, not as a replacement. Many visitors come here after reading Orphanet, specifically because they want the voice the clinical databases cannot provide.
How often is the site updated?
Condition pages are reviewed as new research emerges and as patient feedback identifies gaps. Current-research sections are updated when new trials, treatments, or diagnostic approaches are published. The date of the most recent review is shown on each condition page.
Personal stories are never edited after publication except to correct typos or to apply changes the contributor has specifically requested.
I found an error on the site. How do I report it?
Please write through the contact form. Clinical errors, broken links, accessibility issues, and typos are all welcome reports. If the correction involves clinical content, please include a reference — a journal citation, a clinical guideline, or the name of a specialist who can confirm — so that the change can be made with confidence and documented.
Can I link to, cite, or share content from Bare Your Rare?
Yes, and please do. Condition pages are written to be shared — with your care team, your family, other patients, or anyone else who might benefit. You are welcome to print, save, PDF, link to, cite, or quote any page on the site, with attribution to Bare Your Rare.
If you are a researcher, journalist, or clinician who wants to cite a patient story specifically, please reach out first. Even when a story is published, the person who shared it may want to know how and where it is being referenced.
