Carnergia is a small nonprofit website built to give families living with Primary Carnitine Deficiency clear information and practical tools. We collect as little as possible, and this page says exactly what that is.
What this site collects
Nothing on its own. There are no accounts, no sign-ups, no forms, and no comments. The editable checklists and templates on the Helpful Downloads page are filled in inside your own browser; what you type there is never sent to us. If you print or save a template as a PDF, that file lives only on your device.
If you email us at hello@carnergia.org, we keep your message so we can reply and follow up. We don't add you to any list, share your address, or use it for anything other than answering you. Please don't send medical records or lab results by email; a consultation is the right place for those conversations.
Analytics and cookies
We may use Google Analytics to understand which pages are useful, so we can improve them. When enabled, it sets cookies and collects standard, aggregated usage data (pages visited, approximate region, device type). It does not tell us who you are. If analytics is turned on, this paragraph will be updated with the date and a link to Google's privacy policy.
Hosting
The site is served by Cloudflare, which processes basic connection data (such as IP addresses) to deliver pages and protect against abuse, under its own privacy policy.
Medical disclaimer
Everything on this site is general education from a person living with PCD and is not medical advice. It does not replace guidance from your own metabolic specialist or care team. Nothing here is a product offer or a treatment recommendation.
Questions
Write to hello@carnergia.org.
Last updated October 2026. Legal review pending.