Our promise
The Rareix data charter
Rare disease patients have been let down before. Trust is the whole business. So here, in plain English, is exactly what we will and won't do with your data.
We never sell your identifiable data.
Full stop. The only data we ever share commercially is anonymised and aggregated, and only with your consent.
You're always in control.
Download everything, delete your account, or opt out of any data use, any time. No dark patterns.
No surprises.
Every new commercial use of data requires your explicit, prior consent. We will never quietly change the rules.
No insurer ownership.
We will never sell the community to a health insurer. The cautionary tale of PatientsLikeMe is exactly what we exist to avoid.
Security by design.
Data is encrypted, access is tightly controlled, and patients can only ever see their own private records.
A patient voice in the room.
A patient advisory board reviews our commercial partnerships and has a genuine say in data governance.
This charter sits alongside our formal privacy policy. Where the charter is stricter, the charter wins.