Effective Date: April 21, 2026
Last Updated: April 21, 2026
Who I Am
Bare Your Rare is a personal project run by Thomas Cheesman in Grande Prairie, Alberta, Canada. There is no company, foundation, or team behind the site — it's just me, sharing stories, research, and resources for the rare disease community.
This Privacy Policy explains what personal information is collected when you visit bareyourrare.org, submit the contact form, subscribe to the newsletter, or use any feedback form on a condition page — and how that information is used, stored, and protected.
I try to comply with Alberta's Personal Information Protection Act (PIPA) and Canada's federal Personal Information Protection and Electronic Documents Act (PIPEDA), as applicable to a personal non-commercial project.
Information I Collect
Information You Provide Directly
Contact form submissions — your name, email address, and the contents of your message when you reach out through the Contact page.
Newsletter subscriptions — if you sign up for the newsletter, your email address is stored by the newsletter provider so updates can be sent to you.
Condition-page feedback — each condition guide (ECD, SPS, POEMS, HCS, Fechtner) has an optional feedback form. If you submit it, the form opens your email client pre-filled with your message, and the email arrives at my inbox. No data is stored in a database.
Story submissions — if you share your personal story, you decide what to include. Nothing medical is required.
Information Collected Automatically
Technical data — your IP address, browser type and version, operating system, device type, and referring URL are logged by the web host as part of normal server operation.
Usage data — pages visited, time on page, and general navigation patterns, collected by analytics tools (see Cookies & Analytics).
Cookies — small files stored on your device that help the site remember preferences such as dark/light mode.
How I Use Your Information
To reply to you — if you use the contact form or email me, I use your name and email solely to respond.
To run the newsletter — if you subscribe, your email is used to send occasional updates. You can unsubscribe at any time via the link in every email.
To improve the site — aggregate analytics help me see which pages are useful and where things are breaking.
To share stories, with your consent — submitted stories are only published with your explicit permission, and you can request edits, anonymisation, or removal at any time.
To keep the site running — basic monitoring for spam and abuse.
Your personal information is never sold, rented, or traded. It is not used for third-party advertising.
Health-Related Information
Because Bare Your Rare serves people living with rare medical conditions, here's how health-related information is handled.
No medical records are collected. This is not a healthcare service. Clinical data, diagnostic reports, genetic test results, and treatment records are not requested or stored.
Story submissions are voluntary. If you choose to share details about your health journey, you decide what to include. Please avoid posting specific medication dosages, insurance details, or anything that could identify you clinically if you don't want it publicly visible.
Sensitive details are treated with extra care. Anything health-related you share with me — even voluntarily — will not be shared with third parties without your explicit consent, except where required by law.
You control your story. Request edits, anonymisation, or complete removal at any time by emailing wecare@bareyourrare.org.
Cookies & Analytics
The site uses cookies — small text files stored on your device — for basic functionality and to understand how visitors use the site.
Essential Cookies
Required for the site to function: remembering your dark/light mode preference, basic session handling, and similar. These cannot be disabled without breaking site features.
Analytics Cookies
Bare Your Rare uses Google Analytics (via Google Site Kit for WordPress) to understand general traffic patterns — which pages are popular, where visitors come from, and how long pages are read. IP addresses are anonymised where the tool supports it. Analytics data is not used to identify individual visitors.
Managing Cookies
Most browsers allow you to block or delete cookies through their settings. Doing so may affect some site features. Check your browser's help section for instructions.
Third-Party Services
Bare Your Rare relies on a small number of third-party services to run. Each processes some of your data under their own privacy policies:
Hostinger — web hosting. Servers may be located outside Canada. Hostinger processes technical data (IP addresses, request logs) as part of normal hosting.
WordPress & plugins — the site runs on WordPress with the Astra theme and a handful of plugins (Rank Math SEO, Google Site Kit, Fluent Forms, WPCode). Each plugin may set cookies or process data as described in its own documentation.
Google Site Kit / Google Analytics — for traffic analytics. See Google's Privacy Policy.
Brevo (formerly Sendinblue) — newsletter delivery, if you subscribe. Your email is stored on Brevo's infrastructure to send and manage newsletter communications.
Embedded content — some pages include embedded videos or external content. Those third-party embeds may collect data about your visit under their own privacy policies.
I review these services periodically and choose providers that demonstrate reasonable commitment to data protection.
Data Security
Reasonable measures are in place to protect your personal information from unauthorised access, alteration, disclosure, or destruction:
SSL/TLS encryption on all connections (HTTPS). Regular security updates for WordPress, plugins, and server software. Access to the WordPress admin and email inbox is limited to me, with strong authentication.
However, no method of transmission over the internet or electronic storage is completely secure. Absolute security cannot be guaranteed. If I become aware of a data breach that poses a real risk of significant harm, affected individuals and the relevant privacy commissioner will be notified as required by law.
Data Retention
Contact form messages are retained only as long as needed to respond to your inquiry, and deleted within 12 months unless ongoing correspondence requires otherwise.
Newsletter subscriptions are retained until you unsubscribe. After unsubscribing, your email is removed from active lists within 30 days.
Published stories remain on the site until you request their removal or modification.
Analytics data is retained in aggregate form and does not identify individuals. Raw log data is purged according to the hosting provider's retention schedule.
Your Rights
Under Alberta's Personal Information Protection Act (PIPA) and Canada's PIPEDA, you have the right to:
Access — request a copy of the personal information I hold about you. I will respond within 30 days of receiving your request.
Correction — request that inaccurate or incomplete personal information be corrected.
Withdrawal of consent — withdraw consent for me to collect, use, or disclose your personal information. Note that withdrawing consent may affect certain features (for example, unsubscribing from the newsletter means no further updates are sent).
Deletion — request deletion of your personal information where it is no longer necessary for the purpose it was collected.
Complaint — if you feel your personal information has not been handled appropriately, please contact me first so I can try to resolve it. If you are not satisfied with the response, you may file a complaint with:
Office of the Information and Privacy Commissioner of Alberta
Phone: 780-422-6860
Toll Free: 1-888-878-4044
Website: oipc.ab.ca
Office of the Privacy Commissioner of Canada
Phone: 1-800-282-1376
Website: priv.gc.ca
Children's Privacy
Rare conditions affect people of all ages, including children. Personal information from anyone under the age of 13 is not knowingly collected without parental or guardian consent.
If a parent or guardian wishes to submit a story on behalf of a child, they may do so through the contact form, and I'll work with the family to determine what is appropriate to share publicly.
If I learn that information from a child under 13 has been collected without proper consent, it will be deleted promptly.
Cross-Border Data Transfers
Bare Your Rare is based in Alberta, Canada. Some of the third-party services used (such as Hostinger, Google, and Brevo) may store or process data on servers located outside Canada, including in the United States or European Union.
When your data is transferred outside Canada, it may be subject to the laws of that jurisdiction. Reasonable steps are taken to use providers that maintain appropriate data protection standards, but foreign laws may not provide the same level of protection as Canadian law.
By using this site, you acknowledge that some data processing may occur outside Canada. If you have concerns about cross-border transfers, please email before submitting personal information.
Changes to This Policy
This Privacy Policy may be updated from time to time to reflect changes in practices, technology, legal requirements, or other factors. When significant changes are made, the "Last Updated" date at the top of this page will be refreshed.
For material changes that affect how your personal information is handled, reasonable efforts will be made to notify newsletter subscribers by email or through a notice on the site.
You are encouraged to review this policy periodically. Continued use of the site after changes are posted constitutes acknowledgement of the updated policy.
Contact
If you have questions about this Privacy Policy, want to exercise your privacy rights, or have concerns about how your information is handled, please reach out:
Thomas Cheesman
Bare Your Rare — Grande Prairie, Alberta, Canada
Email: wecare@bareyourrare.org
You can also reach me through the Contact page. Please do not include sensitive personal or medical information in your initial contact — I will follow up securely.