Privacy notice for the Inborn Errors of Metabolism program – patients

Find out how we manage any personal information we collect about you when you apply for funding under the Inborn Errors of Metabolism program.

When this privacy notice applies

This privacy notice applies when you apply for the Inborn Errors of Metabolism program using Form AForm B or Form C.

This notice explains how we (the Australian Government Department of Health and Aged Care) manage personal information consistent with our obligations under the Privacy Act 1988 and the Australian Privacy Principles (APPs).

Information we collect

We collect personal information about your (or your child’s):

  • name
  • address
  • contact details
  • banking details
  • signature
  • gender
  • date of birth
  • residency
  • Medicare number
  • diagnosis
  • relationship to the person with IEM and any relevant custody arrangements

Why we collect this information

We need this information to:

  • determine if you are (or your child is) eligible to receive financial assistance under the program
  • administer the payments to you

If you do not provide your personal information, we cannot decide if you are (or your child is) eligible or pay you.

How we collect this information

We collect personal information directly from you, via the application form.

We will also collect your personal information from your approved metabolic specialist, via the same application form.

Who we disclose your personal information to

We may disclose your information to:

  • Services Australia, to confirm your Australian residency and Medicare enrolment status
  • anyone you’ve agreed we can share with
  • anyone the law requires us to share with

We are unlikely to disclose your personal information to overseas recipients.

How we store your information

We will store your information on electronic media, including our Electronic Document and Records Management System and cloud computing solutions. We also store personal information on paper files. Only authorised Department of Health and Aged Care staff or contractors have access to your personal information. When we no longer need it, or when required by law, we will destroy or de-identify your information.

See our full privacy policy for more details.

How we handle sensitive information

By submitting the application form, you agree to us collecting health information about you (or your child).

We will use it as stated in ‘Why do we collect this information?’

How you can access or correct your information

You can contact us to access your personal information and correct it if it is wrong. The privacy policy includes more information about this process.

Concerns and complaints

Our privacy policy contains information about how you can make a complaint if you think we have breached:

  • the Australian Privacy Principles, or
  • the Australian Government Agencies Privacy Code

The privacy policy also explains how we will manage your complaint.

More on privacy

For more information see our privacy page and our full privacy policy.


Departmental privacy enquiries

Contact to find out more about privacy within the department, or to make a privacy enquiry or complaint.
Privacy officer:
Date last updated:

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