Down Syndrome Association of NSW (ABN 39 023 586 389) (“we”, ”us” and “our”) is committed to protecting and handling your personal information in accordance with our Privacy Policy and the Australian Privacy Principles. 

This Privacy Policy summarises how we handle your personal information. We may revise this Privacy Policy from time to time by updating this page. The revised Privacy Policy will take effect when it is posted on our website. 

What is personal information? 

Personal information means information or an opinion about an identified individual, or an individual who is reasonably identifiable: 

  • whether the information or opinion is true or not 
  • whether the information or opinion is recorded in a material form or not. 

The types of personal information we collect may include your name, date of birth, gender, contact information, credit/debit card information, photographs, sensitive information and other information about your connection and relevance to Down syndrome. 

As part of administering our services, we may collect sensitive information. For example, we may collect medical history information from you, if you are participating in a social program.  

Sensitive information includes the following type of information: racial or ethnic origin; political opinions; membership of a political association; religious beliefs or associations; philosophical beliefs; memberships; sexual orientation; genetic information; biometric information; biometric templates. We will limit the collection of sensitive information to the minimum amount required to perform our services. 

Collection of personal information

We collect personal information from people who are connected to our operations and activities - including employees, donors, recipients of services and supports, participants in advocacy campaigns, health professionals, educators, suppliers, volunteers and service providers.

Where possible, we will collect your personal information directly from you. This may be in person, on the telephone (for example, if you contact Down Syndrome NSW information and support line, or online (for example, if you sign up for an event online). 

We may also obtain personal information from third parties such as contractors (including fundraising service providers), health professionals, educators, list vendors. If we collect personal information about you from a third party and it is unclear that you have consented to the disclosure of your personal information to us, we will take reasonable steps to contact you and ensure that you are aware of the circumstances surrounding the collection and purposes for which we collected your personal information. 

We may collect your personal information for a number of purposes, including: 

  • Services and Support - to provide you with information, services and support, and to evaluate and report on these services. 
  • Marketing - to communicate with you about donations, services, campaigns, causes and events. 
  • Volunteering - to enable you to assist us with volunteering, community fundraising, advocacy and other activities where we seek the community's assistance. 
  • Other issues - communicating with you in relation to our operations, activities and objectives, to verify your identity, to improve and evaluate our programs and services and to comply with relevant laws. 

Where we collect your personal information for a specific purpose not outlined above, we will provide you with a collection notice which explains the primary purpose and any related secondary purposes for which we are collecting your personal information. 

Website usage information and cookies 

When you visit our website, Down Syndrome NSW will collect and store your computer’s assigned IP address, the date and time of your visit, the information accessed and the referring page. We will also collect other non-identifying data for statistical purposes. This information is not linked to your personal information unless required by law.

Like many websites, our website may use ‘cookies’ from time to time. Cookies are small text files that the website transfers to your computer through your web browser to enable the website’s systems to recognise your computer. Cookies may also be used to record non-personal information such as the date, time or duration of your visit, or the pages accessed, for website administration, statistical and maintenance purposes. Any such information will be aggregated and not linked to particular individuals unless required by law. You have the ability to accept or decline cookies by modifying the settings in your browser. Please note that some parts of the website may not function fully for users that disallow cookies. The Down Syndrome NSW website does not provide facilities to guarantee the secure transmission of information across the internet. Whilst reasonable efforts are used to provide security, users should be aware that there are inherent risks in transmitting information across the internet.

Down Syndrome NSW may provide links to third party websites. These linked sites are not under our control, and SWSPHN is not responsible for the content or the privacy practices employed by those websites. Before an individual discloses personal information on any other website, we recommend that the terms and conditions of use and privacy statement of the relevant website be read carefully.

Opting out of direct marketing communications 

Where we use your personal information to send you marketing and promotional information by post, email or telephone, we will provide you with an opportunity to opt-out of receiving such information. By electing not to opt-out, we will assume we have your implied consent to receive similar information and communications in the future. We will always ensure that our opt-out notices are clear, conspicuous and easy to take up. 

If you do not wish to receive direct marketing communications from us, please contact us at Cancer Council Australia, Level 14, 477 Pitt Street, Sydney NSW 2000, Tel: + 61 2 8256 4100 and email:

Use or disclosure of personal information

We may need to disclose your personal information to others in order to carry out our activities. This may include volunteers, contractors and service providers, such as information technology services providers. 

Wherever we propose to disclose your personal information to a third party not outlined above, we will provide you with a collection notice which explains the circumstances in which we might disclose your personal information. 

Data storage, quality and security

Down Syndrome NSW stores most of your information electronically. We take all reasonable steps to ensure that personal information collected, kept, used and disclosed is complete, current and accurate. SWSPHN takes reasonable steps to ensure personal information is protected from misuse, interference and loss, unauthorised access, modification or disclosure. SWSPHN destroys or permanently de-identifies personal information that is no longer needed for any purpose that is permitted by the Privacy Act.

We use Secure Socket Layer (SSL) certificates which is the industry standard for encrypting your credit card and debit card numbers, your name and address so that it cannot be viewed by any third party over the internet. Your financial information is encrypted on our servers and access to this information is restricted to our authorised staff only. 

Access to your personal information 

We will, upon your request, and subject to applicable privacy laws, provide you with access to your personal information that is held by us. 

Your rights to access personal information are not absolute and privacy laws dictate that we are not required to grant access in certain circumstances such as where: 

  • access would pose a serious threat to the life, safety or health of any individual or to public health or public safety 
  • access would have an unreasonable impact on the privacy of other individuals 
  • the request is frivolous or vexatious 
  • denying access is required or authorised by a law or a court or tribunal order 
  • access would be unlawful, or 
  • access may prejudice commercial negotiations, legal proceedings, enforcement activities or appropriate action being taken in respect of a suspected unlawful activity or serious misconduct. 

If we refuse to grant you access to your personal information, we will provide you with reasons for that decision (unless it is unreasonable to do so) and the avenues available for you to complain about the refusal. 

Updating your personal information 

If you require access to, or wish to update your personal information, please contact us on 02 9841 4444 or email:


If you have any queries or would like to make a complaint relating to our Privacy Policy or the manner in which we handle your personal information, please contact our Privacy Officer on 02 9841 4444 or email: We endeavour to respond to complaints and queries within twenty one days of their receipt. If you are dissatisfied with our response, you may refer the matter to the Australian Information (Privacy) Commissioner (see 

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