Privacy Policy

1. Purpose and nature

Alström Syndrome Australia Ltd (ABN 19 697 643 628) (Alström Syndrome Australia, we, us or our) is a company limited by guarantee and not-for profit charity currently seeking registration with the Australian Charities and Not-for-profits Commission.

This Privacy Policy explains how we intend to collect, store, use, disclose, protect and otherwise handle your personal information, having regard to the Australian Privacy Principles (APPs) contained in the Privacy Act.

This Privacy Policy does not constitute a contractual representation, promise, guarantee or warranty by Alström Syndrome Australia to you as to the manner in which we will or may collect, store, use, disclose, protect or otherwise handle your personal information.

This Privacy Policy applies to Alström Syndrome Australia and our related entities, such as its subsidiaries, directors, officers, volunteers and our employees. These related entities comply with the same obligations that Alström Syndrome Australia has, to protect your personal information under this Privacy Policy.

2. What is personal information?

Personal information is information or an opinion about you, whether true or not and whether recorded in a material form or not, from which you can be reasonably identified.

3. Why does Alström Syndrome Australia collect personal information?

Alström Syndrome Australia has the charitable purpose of advancing health in relation to people in Australia living with Alström syndrome and any symptoms or conditions associated with it. We collect personal information for the primary purpose of providing, administering, improving and personalising our services and to support our operations. We may also collect and use personal information for related secondary purposes closely related to this primary purpose.

If we do not collect your personal information, we may not be able to provide you with our products and services.

4. What personal information does Alström Syndrome Australia collect?

The types of personal information we collect include:

(a) names;

(b) contact details (including address, email address, telephone number(s) and other contact details);

(d) banking details and credit card details;

(e) gender; and

(f) other information you provide to us.

1.1 Sensitive Information

Personal information collected by us may include sensitive information, which is defined in the Privacy Act as information or an opinion about such things as an individual's racial or ethnic origin, political opinions, membership of a political association, religious or philosophical beliefs, membership of a trade union or other professional body, criminal record or health information.

We will only use sensitive information:

(a) for the primary purpose for which it was obtained;

(b) for a secondary purpose that is directly related to the primary purpose;

(d) where required or authorised by law.

5. How does Alström Syndrome Australia collect your personal information?

We will collect personal information only by lawful and fair means and not in an unreasonably intrusive manner. When you provide us with personal information you consent to the use, disclosure and handling of your personal information in accordance with this Privacy Policy and any subsequent amendments (see clause Error! Reference source not found.).

5.1 Collecting information from you

If it is reasonable and practical to do so, we will collect personal information directly from you.

Depending on how you choose to interact with us, we may collect your personal information when you contact, or are contacted by, us or our service providers by telephone, email, through our website, social media or other digital services, including when you complete a form or document and provide it to us.

5.2 Collecting information from third parties

We may also collect information about you from other people (e.g. a third party administrator) or independent sources. For example, we may collect personal information about you from our services providers. However, we will only do so where it is not reasonable and practicable to collect the information from you directly. Where we have collected your information from a third party, such personal information will be held, used and disclosed by us in accordance with this Privacy Policy.

5.3 Collecting information from visits to our website

We may collect information about how you use and visit our website. For example, we record your server address, the date and time of your visit, the pages you visited, any documents you downloaded, the previous site you visited and the type of device, browser and operating system you used.

We use and disclose this information in anonymous, aggregated form only for purposes including statistical analysis and to assist us to improve the functionality and usability of our website. You are not individually identified, however we reserve the right to use or disclose this information to try to locate an individual where we reasonably believe that the individual may have engaged in any unlawful or inappropriate activity in connection with our website, or where we are otherwise required or authorised by law to do so.

We may also collect information based on how you use our website, including through 'cookies', web beacons and other similar technologies.

Cookies are small text files that are transferred to your computer's hard drive through your web browser to enable our systems to recognise your browser and record non-personal information such as the date, time or duration of your visit and the pages accessed, for website administration, statistical and maintenance purposes (Cookie Information).

We use cookies to provide you with a more consistent experience across our services. No attempt is made by us to use Cookie Information to personally identify you. However, if Cookie Information is linked with personal information as set out above, this Cookie Information becomes personal information and will be treated in the same manner as the personal information to which it has been linked.

You can remove or reject cookies by adjusting the settings on your web browser. Please note that some parts of our website may not function fully for users that disable cookies.

5.4 Unsolicited information

If we receive personal information that we have not requested and determine that the personal information received is not reasonably necessary to provide our services, we will take all lawful and reasonable steps (if any) to de-identify or destroy that personal information.

5.5 Anonymity/pseudonymity

Where practicable, you may be able to interact with us anonymously or by using a pseudonym. Circumstances where it is not practicable, however, include where personal information is required, for example, to complete a credit card transaction or to contact you about our services or events.

6. How does Alström Syndrome Australia hold your personal information?

The security of your personal information is important to Alström Syndrome Australia. Accordingly, we take reasonable steps to protect your personal information from misuse, loss and unauthorised access, modification or disclosure.

These steps include the implementation of the following safeguards:

(a) staff training;

(b) internal information security policies;

We will take reasonable steps to permanently de-identify or responsibly destroy personal information if it is no longer needed for the purpose for which the information was used or disclosed.

6.1 Security breach procedures

Our data security practices have been adopted with a view to protecting the data held by Alström Syndrome Australia. Notwithstanding this, individuals should be aware that there are inherent risks associated with the transmission of data over the internet and other mediums. Accordingly, we cannot guarantee any transmission will be completely secure.

7. How does Alström Syndrome Australia use your personal information?

We may hold, use or disclose your personal information for a range of purposes so that we can provide, administer, improve and personalise any products and services that you request.

For example, we may hold, use or disclose your personal information to:

(a) Respond to your enquiries;

(b) contact you with newsletters, marketing or promotional materials and other news updates about Alström Syndrome Australia;

(d) process donations, bequests, financial contributions and purchases of products, including merchandise, tickets and other goods;

(e) send event, seminar or workshop invitations or tickets;

(f) to evaluate the effectiveness of our marketing on the website and for statistical analysis;

(g) consider any concern or complaint that you raise against us or to manage any legal action between you and Alström Syndrome Australia;

(h) prevent or investigate any actual or suspected fraud, unlawful activity or misconduct; or

(i) comply with any relevant laws, regulations, codes of practice and court orders.

7.1 Direct Marketing

We may use your personal information to identify and promote products or services that may be of interest to you.

At any time you may opt out of receiving direct marketing communications from Alström Syndrome Australia. o do so, simply click the unsubscribe link in our e-newsletters or email us at info@alstromsyndromeaustralia.com.au. We will promptly remove you from our marketing communications.

8. How is personal information disclosed to others?

Alström Syndrome Australia does not sell, rent or trade personal information to, or with third parties.

We may however, in order to provide its products and services to you, disclose your personal information to third parties in limited circumstances, including to external providers that perform services on behalf of Alström Syndrome Australia.

Alström Syndrome Australia will not disclose your personal information to third parties who are overseas. However, we may store your information in the cloud or use storage providers that are networked or use electronic storage. As electronic or networked storage can be accessed from various countries via internet connection, it may be accessible overseas.

8.1 Third Party Links

Our website may contain certain links to other websites. We do not share your personal information with those websites, and we are not responsible for the privacy practices applying in respect of those websites.

9. Change of control

If Alström Syndrome Australia sells, assigns or otherwise transfers part or the whole of our business, your personal information, which was collected by us through your use of the service or acquiring of products, may be among the items transferred or sold to the extent that it is relevant to our business.

10. How you may access or correct your personal information

You may contact us to request access to the personal information we hold about you at any time. You may also ask us to correct information about you that you may believe is inaccurate, incomplete or out of date.

Please contact us using the contact details set out in clause Error! Reference source not found. We will need to verify your identity before giving you access to, or correcting, your personal information. We will respond to the request within a reasonable period after the request is made. There is no charge to make a request, however we may charge a reasonable fee to cover the administrative costs of retrieving your personal information.

In certain circumstances, we may refuse, or be unable, to correct or provide you with access to your personal information. In these circumstances, we will write to you to explain the reasons why this is the case.

11. How you may complain if you have concerns about how Alström Syndrome Australia has managed your personal information

If you have a complaint related to how we have managed your personal information, please contact us using the contact details set out in clause Error! Reference source not found. We may ask you to place your concerns in writing so that its compliance staff can fully understand and investigate your complaint.

We will provide you with an estimated response timeframe in relation to your complaint. In any event, we will endeavour to respond to your complaint within [60] days.

If a complaint remains unresolved, you may contact the Office of the Australian Information Commissioner (OAIC) at www.oaic.gov.au to have the complaint heard and determined.

12. How to contact us
If you have any questions about this Privacy Policy or our management of your personal information, please contact Alström Syndrome Australia using the details below.

Attention: Privacy Policy

Email: info@alstromsyndromeaustralia.com.au

Website: www.alstromsyndromeaustralia.com

13. Changes to Alström Syndrome Australia's Privacy Policy and information handling practices

This Privacy Policy is subject to change at any time so we encourage you to review this Privacy Policy at regular intervals. If we change this Privacy Policy an updated version will be posted on our website to notify you of this change. By continuing to use our services after that time you will be deemed to have accepted any changes to its Privacy Policy.