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"No disease is rare when it affects someone you love"

National Organisation
for Rare Diseases


SMILE Privacy Policy


The SMILE (Supporting Medical Innovation for Life Enhancement) Foundation (SMILE) is a charitable organisation whose aim is to alleviate suffering caused by rare childhood diseases. A part of what we do requires requires the collection of personal information, and in doing so we are committed to protecting your privacy. This privacy policy will help you understand how SMILE collects, uses and safeguards your personal information. This privacy policy is based on the Australian Privacy Commissioner's National Principles for the Fair Handling of Personal Information. If you have comments or questions regarding this privacy statement, please contact us.

Collection, Use and Access to Personal Information

SMILE collects personal information about donors, members and other individuals connected to SMILE. We only collect personal information necessary for SMILE's functions and activities.

The personal information that SMILE collects may also include sensitive health information as to whether you or a person to whom you are related has a rare disease. We will only ever collect such sensitive information after you have given us consent to do so. This is the only form of sensitive information that SMILE collects.

We may use the personal and sensitive information we collect from you for the purposes of processing requests you make of us; offering you services or determining your likely interest in donating funds to SMILE. Occasionally we will also contact you for the purpose of informing you about third party research projects, where those projects are related to helping improve health outcomes for rare childhood diseases. We will not generally disclose your personal information to any other person or organisation without your consent, although we may do so to permit others (for example, mailing houses) to provide services that we have contracted out to them.

We do not otherwise share the personal information we collect with any other organisation except other SMILE affiliates or except where we are required to do so by law. From time to time, we may compile statistical data from the personal information we have collected. In these instances, the data will be aggregated and depersonalised before it is disclosed to third parties.

Access to personal information and Data Quality

Wherever possible, SMILE will provide you with access to the personal information that we may hold about you. If you would like to request access to this information, please contact us.

Updating your information

We take all reasonable steps to keep all information we hold up-to-date. If you wish to modify information that you have previously given us, or if you wish to opt out of future communications, please contact us.

Data Security

We are concerned to provide a secure environment for your privacy. We take all reasonable steps to ensure the security of the personal data we hold from such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.