The MPN AA is an unincorporated volunteer group working in partnership with the Leukaemia Foundation. The Leukaemia Foundation manage the dedicated MPN Fund and provide governance for the MPN AA. The aim of the MPN AA is to increase awareness and understanding of MPNs, to support MPN patients, and to advocate on behalf of the Australian MPN community. Together, we strive to advocate for access to emerging treatments as well as contribute toward research to aid in the search for answers and a cure.

On occasion, we may collect your Personal Information. This policy outlines our ongoing obligations to you in respect of how we manage your Personal Information in line with the principles contained in the Privacy Act 1988. These guidelines govern the way in which we collect, use, disclose, store, secure and dispose of your Personal Information.

What is Personal Information and why might we collect it?

You are able to use our website without disclosing any personal information.

Any Personal Information is collected ONLY with the consent of the individual. Personal Information we may collect could include: names, addresses, email addresses, and phone numbers.

We would collect your Personal Information for the primary purpose of providing our services to you. You may unsubscribe from our mailing/marketing lists at any time by contacting us in writing.

When/if we collect Personal Information we will, where appropriate and where possible, explain to you why we are collecting the information and how we plan to use it.

Disclosure of Personal Information

Personal Information may be disclosed in a number of circumstances including the following:

  • Third parties where you consent to the use or disclosure; and
  • Where required or authorised by law.

Security of Personal Information

Your Personal Information will be stored in a manner that reasonably protects it from misuse and loss and from unauthorized access, modification or disclosure.

When/if your Personal Information is no longer needed for the purpose for which it may have been obtained, we would take reasonable steps to destroy or permanently de-identify your Personal Information.

Access to your Personal Information

You may access the Personal Information we hold about you and to update and/or correct it. If you wish to access any Personal Information we may hold about you, please contact us in writing.

In order to protect your Personal Information we may require identification from you before releasing the requested information.

Maintaining the Quality of your Personal Information

It is an important to us that any Personal Information we may hold is up to date. We will take reasonable steps to make sure that your Personal Information is accurate, complete and up-to-date. If you find that the information we have is not up to date or is inaccurate, please advise us as soon as practicable so we can update our records and ensure we can continue to provide quality services to you.

Policy Updates

This Policy may change from time to time and is available on our website.

Privacy Policy Complaints and Enquiries

If you have any queries or complaints about our Privacy Policy please contact us at:

MPN Alliance Australia – mpnaa@mpnallianceaustralia.org.au

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