Privacy Statement

Your privacy is important to us. Parkinson’s NSW recognises the importance of protecting your privacy and the confidentiality of your personal information.

This Privacy Procedure explains how Parkinson’s NSW collects, holds, uses and discloses your personal information.

Parkinson’s NSW is bound by the Privacy Act 1988 (Cth) and must adhere to the Australian Privacy Principles in relation to collecting, holding, using, disclosing, securing and allowing access to your personal information.

As a Registered Provider of services under the NDIS, Parkinson’s NSW must also comply with the privacy provisions of the National Disability Insurance Scheme Act 2013 and the National Disability Insurance Scheme (Code of Conduct) Rules 2018.


Personal Information

Personal information is any information or opinion that can identify or be used to identify an individual. Parkinson’s NSW may collect and hold personal information from its donors, supporters, volunteers, contractors, job applicants, visitors and other individuals.

Sensitive information

Parkinson’s NSW may collect health or other sensitive information, such as information about your Parkinson’s diagnosis. Parkinson’s NSW may share health or other sensitive information with primary and allied healthcare provider partners and for service delivery and program purposes.

They may also share with Parkinson’s NSW health or other sensitive information they may have collected about you. By providing health or other sensitive information to Parkinson’s NSW, an individual consents to Parkinson’s NSW collecting this information and disclosing it for the purposes set out in this Privacy Procedure.


When an individual visits or uses a website of Parkinson’s NSW, personal information may be collected automatically through cookies, including IP address and/or domain name, operating system (type of browser and platform), and the date, time and length of visit to the website.

This information is primarily used for the compilation of statistical information about the use of the website. Cookies may also be used to assist Parkinson’s NSW and our third-party providers present targeted and customised advertising to an individual on our website and/or on third party websites.

Web site traffic

Parkinson’s NSW uses Google Analytics to track visits to its website. Google Analytics is a web analytics tool that helps website owners understand how visitors engage with their websites.

Google Analytics collects information anonymously. It reports website trends without identifying individual visitors.

This information is used to track the effectiveness of websites. Types of data collected include visits, viewed pages and duration of visit to the sites. These statistics will not identify an individual. For more information, read Google’s Privacy Policy.

Links to other websites

Parkinson’s NSW website may contain links to third-party websites, and third-party websites may also link to the Parkinson’s NSW website. This Privacy Procedure does not apply to external links or other websites. These third-party websites may collect your personal information. Parkinson’s NSW encourages individuals to read the privacy policies of any websites you link to from the Parkinson’s NSW website.

The information we may collect

  • Your name and contact details such as e-mail, address and phone numbers; date of birth, gender and financial information (e.g. bank account or credit card details) if you are donating; requesting or providing goods or services from or to Parkinson’s NSW
  • Details of donor’s donation history, emails, letters and other interactions with Parkinson’s NSW
  • Health information such as information about your health condition(s), medications you use and your primary and allied medical practitioners
  • Information provided within applications for employment or volunteer with Parkinson’s NSW
  • Responses to questions, surveys or queries that Parkinson’s NSW may ask you
  • Information required to improve the services and information we provide.

We may also collect your personal information from other websites, directories, databases and social media sites.

How we collect your information

There are several ways in which Parkinson’s NSW collects information. Directly from you in several ways (but not limited to):

  • Over the phone
  • Via the website
  • By email
  • When we deliver a service or program to you
  • Forms, coupons, registrations, surveys, feedback requests, and other correspondence (both in writing and electronically)
  • When attending a Parkinson’s NSW event, activity, seminar or activity supporting Parkinson’s NSW
  • Through social media messages or conversation
  • When you interact with us

Where possible, we will collect your personal information directly from you or your nominated representatives. However, there may be circumstances in which we need to collect your information from other people or organisations.

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 have collected your personal information.

If you have provided us with information about another person, then you need to tell that other person that you have done so, that they have a right to access their information and that they can refer to the Privacy Procedure for information on how Parkinson’s NSW will handle their personal information.

Third-Party Providers

We use third parties to fundraise on our behalf, including through telemarketing programs. These third-party providers will collect your personal information directly from you when you provide it over the phone, through our or another website, in person or by email. This may also include workplace giving.

Third-party organisations based in Australia are also bound by the Privacy Act and Australian Privacy Principles. If they are Registered Providers of services under the NDIS, they must also comply with the privacy provisions of the National Disability Insurance Scheme Act 2013 and the National Disability Insurance Scheme (Code of Conduct) Rules 2018.

If someone donates on your behalf and asks that you receive information about their gift, we will collect the personal information they provide about you.

We may also collect your personal information from other websites, directories, databases and social media sites, public records, lists and third-party surveys.

You can choose to remain anonymous or use a pseudonym when you contact us and if you donate. We will respect your anonymity. If you choose not to provide us with your personal information, we may not, for example, be able to provide you with an official tax-deductible receipt or a letter of thanks or assist you fully with your query or complaint.

When transferring information about you through a third-party provider, it will only be shared through secure file transfer.

How we use your information

If you are a person Parkinson’s NSW supports, or are connected to a person we support (e.g. selected family member, advocate or nominated representative), we may use your information to:

  • Process any donations you may send to us
  • Send you information about Parkinson’s NSW including newsletters, updates and information on appeals
  • Update you if we have information that may affect your support
  • Confirm who you are when you contact us
  • Keep you informed about our work, including by mail, email, SMS or telephone
  • Respond to your questions, comments, compliments or complaints
  • Circulate questionnaires to improve our services and programs
  • Analyse donor activity in order to improve our effectiveness, including for quality assurance
  • Report on our activities including producing our Annual Report
  • Conduct quality assurance activities
  • Carry out internal functions including administration, training, accounting, audit and management of information technology
  • Comply with laws and regulations and to report to funding and Government agencies

Disclosing your information

Parkinson’s NSW will only use and disclose your personal information for the purposes described under the heading ‘How we use your information’ and in accordance with the Privacy Act, the Australian Privacy Principles.

As a Registered Provider of services under the NDIS, Parkinson’s NSW also comply with the privacy provisions of the National Disability Insurance Scheme Act and the National Disability Insurance Scheme (Code of Conduct) Rules.

Parkinson’s NSW will not disclose personal information about you to any other individuals or organisations unless authorised by law (including in emergency situations or to assist law enforcement).

Parkinson’s NSW engages with a range of suppliers, contractors and partners, service providers and other third parties to whom your personal information may be disclosed to enable the activities and functions of Parkinson’s NSW. They may include (but not limited to):

  • Information technology service providers
  • Marketing agencies
  • Mailing houses
  • Banks and credit card companies
  • Recruitment agencies
  • Professional advisers
  • Insurers
  • Government and regulatory bodies, including the National Disability Insurance Agency, Medicare, the Department of Social Services, the Department of Health and Human Services, and the Australian Taxation Office.
  • People acting on your behalf including your nominated representatives, legal guardians, executors, trustees and legal representatives.
  • Lawyers, auditors, banks and other advisors appointed by Parkinson’s NSW or acting on its behalf.
  • Situations where disclosure is required by law, including where required by the police, the Disability Services Commissioner, or to comply with compulsory notices from courts of law, tribunals or government agencies.

Parkinson’s NSW may also use and disclose your personal information to overseas providers such as information technology cloud service providers. We take reasonable steps through our agreements with third-party providers to comply with our security guidelines, this Privacy Procedure, and all relevant privacy laws in Australia.

Parkinson’s NSW takes reasonable steps to make sure that these organisations will protect the privacy of your personal information, in accordance with this Privacy Procedure.

Opting out

Parkinson’s NSW relies on the generosity of donors to carry out its mission. Therefore, we may also use your personal information for direct marketing purposes to promote upcoming events, appeals, projects or other activities.

However, where we do use your information for this purpose, we will always provide a means for you to opt out of receiving these communications.

If you wish to opt out of communications you are currently receiving, use any of the clear links that we provide in all our digital communication (like email or SMS) or call Parkinson’s NSW on 1800 644 189 or email us at

How we store your information

Parkinson’s NSW understands the importance of protecting your personal information from misuse, loss, and unauthorised access or use. We will take all reasonable steps to ensure that your personal information is secure.

Parkinson’s NSW holds your personal information securely through physical and electronic means. We have restricted physical access to our offices, hard-copy files are stored in secure cabinets and storerooms, and staff are trained in our privacy procedures.

We use security encrypted response forms to protect the personal and financial information you provide us over the Internet and secure online payment systems, our in-house IT system is secured with a firewall and anti-virus scanners, your information is stored in secure databases and only authorised staff have access to your information – and only when it is required.

Parkinson’s NSW will destroy or de-identify your personal information when we no longer need it for the purpose for which it was collected, unless the law requires otherwise. If you send us your personal information when we don’t ask for it, we will determine whether or not the information is related to one or more of our activities. If the information is not relevant to what we do, we may destroy or de-identify the personal information if it is lawful and reasonable to do so.

How to access and correct your information

You have a right to access, update and correct personal information that Parkinson’s NSW holds about you.

Before providing access to or correcting your personal information, we may require you to verify your identity. In the unlikely event that we are unable to provide you with access to your personal information (for example, where granting you access may infringe on someone else’s privacy), we will provide you with written reasons for denying access.

It is OK to change your mind about your consent to collect and share your information, but you need to let us know of your change in your wishes.

Requests for access to personal information or questions about this Privacy Procedure can be emailed to

Enquiries, feedback and complaints

We welcome your feedback. Enquiries or concerns about privacy matters, including complaints about how Parkinson’s NSW handles personal information, should be made in writing as detailed below under the heading ‘Contacting us’. Parkinson’s NSW will respond to all enquiries and complaints within 30 days.

If you would prefer to deal with us anonymously, you are not required to provide your personal information unless we are required by law to deal only with identified individuals, or it is impractical for us to deal with individuals who have not identified themselves.

If you are not satisfied with how we have handled your matter, you may wish to contact the Office of the Australian Information Commissioner (OAIC) at

If you wish to make a complaint about our privacy practices, please read the Parkinson’s NSW Feedback and Complaints Procedure and then:



  • Submit a written complaint by post to:

Chief Executive Officer
Parkinson’s NSW
PO Box 71
North Ryde BC NSW 1670

Contacting us

Please contact us if you:

  • Have any enquiries related to the Privacy Procedure of Parkinson’s NSW
  • Would like to know what personal information Parkinson’s NSW holds about you and how you can gain access to it, or you would like to correct or update it
  • Believe that your privacy has been breached
  • Believe that Parkinson’s NSW has breached the Australian Privacy Principles, the Privacy Act, the National Disability Insurance Scheme Act, or the National Disability Insurance Scheme (Code of Conduct) Rules and you wish to make a complaint.

You can contact Parkinson’s NSW by:

  • Writing: Parkinson’s NSW, PO Box 71, North Ryde BC, NSW 1670
  • Emailing:
  • Calling: 1800 644 189 between 9am and 5pm, Monday to Friday

Updates to this Privacy Procedure

This Privacy Procedure may be updated from time-to-time and published on the Parkinson’s NSW website.