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Data Deletion Request

Last updated: 2026-05-27

You can delete your Forgotten Rare account and personal data at any time. There are two ways to do this.

1. Delete from inside your account (recommended)

Sign in and go to your account page. Under Data & privacy you'll find Export my data and Delete my account. Deletion removes your profile, child records, appointments, notes, symptoms, journal entries, and uploaded documents linked to your account.

2. Email request

If you can't sign in, email privacy@forgottenrare.com from your account address with the subject "Data deletion request". We will confirm and remove your data within 30 days.

What we keep

  • Billing records required by tax and payment-processor regulations (typically 7 years).
  • Aggregated, de-identified usage statistics that cannot be tied back to you.
  • Records we are legally required to retain (e.g., fraud investigations).

Before you delete

Consider exporting a copy of your data first - especially binder entries, family history, and medical-story drafts. Deletion is permanent and cannot be reversed.

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Forgotten Rare provides educational, organizational, and emotional support only and does not provide medical, legal, insurance, financial, mental health, genetic counseling, or emergency advice. Always consult qualified professionals regarding your specific situation.

Not HIPAA compliant. Forgotten Rare is a personal support tool, not a medical records system. Please do not enter information you would not be comfortable storing outside of a HIPAA-protected environment. Avoid posting full identifiers (full name + date of birth + medical record numbers) and any data you are required to keep within a HIPAA-covered system.

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