Privacy Policy
1. POLICY STATEMENT
1.1 Your privacy is important to us. Primary Ciliary Dyskinesia Australia (PCD AUSTRALIA INC. PTY Ltd) (PCDA) is committed to protecting your privacy and complying with the Australian Privacy Principles contained in the Privacy Act 1988 (Cth) (Privacy Act). PCDA is committed to respecting the privacy of the personal information you may provide to us when we interact with you – for example as volunteers, members, donors, supporters, and stakeholders. PCDA may modify or update this policy from time to time by publishing it on the PCDA website. PCDA encourages interested parties and individuals to check the PCDA website periodically to ensure that they are aware of the current Privacy Policy
2. PURPOSE
2.1 The purpose of this policy is to explain how we manage the personal information we hold about you. Please note that this Privacy Policy is to be read subject to any overriding provisions of law or contract.
3. SCOPE
3.1 This policy applies to anyone whose personal information is held by PCDA.
4. POLICY
4.1 Your acknowledgement and consent
By continuing to correspond with us, using our website and supporting our fundraisers, by providing us with personal information, you are taken to have read and understood this Privacy Policy and you have consented to us managing your personal information in the way described in this Privacy Policy.
4.2 What is personal information?
For the purposes of this Privacy Policy, “personal information” has the meaning given to it in the Privacy Act, being information or an opinion about an identified individual, or an individual who is reasonably identifiable, whether the information is true or not, and whether the information or opinion is recorded in a material form or not.
Examples of personal information include an individual’s name, email and postal address, telephone number and date of birth.
4.3 Collecting personal information
What kinds of personal information do we collect and hold?
The types of personal information we may collect include, but are not limited to:
(a) contact details and other details including:
(i) your full name and date of birth, and personal contact details (including your address, landline or mobile telephone numbers and e-mail address); and
(ii) contact and identification details of any third party that you have authorised to negotiate or provide your personal information on your behalf (including any attorneys appointed by you under a power of attorney or in relation to bequests an Executor of your Estate);
(b) volunteering details including your resume, and any other information required for us to approve you as an PCDA volunteer;
(c) if you are a health professional, your professional information including but not limited to:
(i) professional accreditation details;
(ii) practice details (including address and contact details);
(d) any correspondence between you and PCDA; and
(e) any other personal information provided to us when you make an inquiry, request information, respond to marketing or lodge a complaint.
4.4 Sensitive Information
We may also collect sensitive information from you. Sensitive information is defined by the Privacy Act to be certain kinds of personal information. Examples of sensitive information that we may collect from you through providing information and other services to you include:
(a) health and medical information – for example: genetic information for participating in research programs or clinical trials; and patient or treatment history provided when seeking advice from PCDA
Sensitive information is subject to stricter controls. We will only collect sensitive information about you with your consent. If we receive any sensitive information about you, we will handle it in accordance with this Privacy Policy, the Privacy Act and the APPs.
4.5 How do we collect personal information?
Where possible, we will always try to collect personal information directly from you – for example when you:
(a) request information, contact or deal with us through our website, or contact us by telephone;
(b) correspond with us in writing (such as letters and emails); or
(c) meet with us in person.
We may also obtain your personal information from third parties we deal with, such as:
(a) any person you authorise to deal with us on your behalf; and
(b) any other organisation with whom we deal.
Where we collect personal information from third parties you refer to us, we will assume, and you should ensure, that you have made that third party aware of the referral and the purposes of collection, use and disclosure of the relevant personal information.
4.6 Dealing with us anonymously
Whenever it is lawful and practicable, you will have the option of not identifying yourself when dealing with us. For example, general access to our website does not, and general telephone queries do not, require you to disclose personal information about yourself.
4.7 Why do we collect, hold, use and disclose personal information?
We collect, use and disclose your personal information to enable us to provide services, products and information to assist individuals and health care professionals in their understanding, involvement with and support of Primary Ciliary Dyskinesia, and to otherwise carry out our functions and activities.
In particular, we may collect, use and disclose your personal information in order to:
(a) respond to your requests or inquiries;
(b) provide you with the services, products and information you requested. For example, providing you with information, upcoming event information, promotions or special member offers such as boredom buster bags etc;
(c) enable you to make a donation to us online including:
(i) making a personal donation or a donation on behalf of a company, organisation, community club or school;
(ii) making a bequest; and
(iii) making a donation in memoriam;
(d) enable you to become a PCDA member, volunteer, or affiliated health care professional, and engaging in a business or other commercial relationship with you;
(e) enable you to participate in research initiatives;
(f) enable you to engage in fundraising initiatives and awareness campaigns for PCDA;
(g) communicate with you during the course of your relationship with us;
(h) notify you about important changes or developments to our functions, activities, services
(i) administer, support, improve and develop our organisation and services;
(j) update and maintain our records – for example, account management and administering records of our subscription services;
(k) if you lodge a complaint with us – process and respond to your complaint;
(l) any other purpose which relates to or arises out of requests made by you;
(m) do anything which you authorise or consent to us doing; and
(n) take any action we are required or authorised by law to take.
PCDA will not sell, trade or rent personal information we hold about you to unaffiliated third parties without your prior consent.
4.8 Disclosing your personal information
PCDA will not provide your personal information to any other individuals or organisations without your prior consent except where required by law to do so (for example: government agencies and regulatory authorities) or where that information is provided on a confidential basis to contractors who provide services to PCDA (for example website or database management). In these cases, we ensure that our contractors are also bound by the Australian Privacy Principles to keep your personal information confidential. PCDA is very thankful to people who are willing to share their personal stories of PCD with others through media stories, on our website and/or in our newsletters. We will only use your personal information for publicity purposes or as stories in newsletters with your express written permission.
4.9 Direct Marketing
If you consent to your personal information being used for direct marketing, we may use your personal information to provide you with information about fundraising activities, services and promotions.
If you do not wish to receive such information, you can opt-out at any stage. If you decide to opt-out, you will be removed from PCDA’s distribution list to ensure that you do not receive future direct marketing material.
There may be times, however, when the law requires us to provide certain information to you (for example health and safety information). We will continue to send this information to you.
4.10 Dealing with us online
This Privacy Policy applies to your use of our principal website PCD Australia and related websites / mobile apps that PCDA may create/use from time to time and any personal information that you may provide to us via these sources.
Our website may also contain links to other websites which are outside our control and are not covered by this Privacy Policy. If you access other websites using the links provided, the operators of these websites may collect information from you which will be used by them in accordance with their privacy policy, which may differ from ours.
When you visit our website, we and/or our contractors may collect certain information about your visit.
4.11 Cookies and IP address tracking
A ‘cookie’ is a small data file transferred by a website to your computer’s hard drive. PCDA sends cookies when you:
– view pages on our website;
– send a request to PCDA; or
– register yourself on our website.
The ‘cookie’ does not give us access to your personal information, but we may use the cookie to identify your computer.
There are two types of cookies; ‘session’ and ‘permanent’ cookies.
– Session cookies: Do not stay on your computer after you leave our website or close your browser.
– Permanent cookies: Remain on your computer. They are used to facilitate registration services.
Permanent cookies can be manually removed by the user.
Most browsers automatically accept cookies by default, but you can refuse cookies or selectively adjust your preferences in your browser. If you switch off cookies, there could be features of PCDA’s website that may not be available to you. When you look at PCDA’s website, our Internet Service Provider makes a record of your visit and logs the following information for statistical purposes only. – The user’s IP address – The user’s top level domain name (for example .com, .gov, .au, etc) – The date and time of visit to the website – The pages accessed and documents downloaded – The previous site visited – The type of browser used No attempt is or will be made to identify users or their browsing activities outside this site. In the unlikely event of an investigation, a law enforcement agency may exercise a warrant to inspect activity logs.
4.12 Social Media
We may collect personal information from our followers/subscribers on social media channels including Facebook, Twitter, Instagram and Push Notification Applications. The information would be used for the purposes of developing and displaying PCDA promotion materials as well as to send notifications via mobile applications regarding fundraising initiatives or news. We have procedures in place to ensure your personal information collected from social media channels is in accordance with this Privacy Policy.
4.13 Personal Information Storage and Security Arrangements
We take reasonable steps to protect your personal information from interference, loss, misuse, unauthorised access, modification or disclosure. We have established policies, procedures and systems to keep your personal information secure. When we no longer require your personal information, we will take reasonable steps to destroy, delete or de-identify your personal information in a secure manner. However, we may sometimes be required by law to retain certain personal information.
4.14 Accessing and Correcting your Personal Information
Correcting your personal information
So that we can carry out our activities and functions, it is important that the personal information we hold about you is complete, accurate and up to date. At any time, while we hold your personal information, we may request that you inform us of any changes to your personal information. Alternatively, if you believe that any of the personal information, we hold about you is inaccurate, out-of-date, incomplete, irrelevant or misleading or needs to be corrected or updated, please contact us using the contact form on our website. We will respond to a request to correct your personal information within a reasonable time.
Accessing your personal information
You may also request access to the personal information we hold about you by contacting us using the contact form on the website. We will respond to a request for access within a reasonable time – either by giving you access to the personal information requested, or by notifying you of our refusal to give access.
Access and correction arrangements generally
We may require you to submit your requests in writing and require that you verify your identity before we respond to any request. If we cannot respond to you within a reasonable time (generally within 30 days), we will contact you and provide a reason for the delay and an expected timeframe for finalising your request. Please note that in certain circumstances, we are permitted by law to refuse to provide you with access to your personal information.
If we decide not to provide you with access to or correct your personal information, we will provide you with written reasons for our decision and advise you of the further complaint mechanisms available to you.
4.15 Lodging a complaint
If you have a complaint about how we handled your personal information or about any decision to refuse access or correction of your personal information, please contact us using the contact form on the website. We will request that you lodge your complaint in writing. We will acknowledge receipt of your complaint as soon as possible after receiving your written complaint. We will then investigate the circumstances of your complaint and provide you with a response within a reasonable timeframe. If you are still not satisfied with how your complaint is handled by us, then you may lodge a formal complaint with the Office of the Australian Information Commissioner at http://www.oaic.gov.au/privacy/making-a-privacy-complaint
4.16 Notifiable Data Breaches
The Privacy Act Amendment Notifiable Data Breaches (NDB) Act 2017 requires PCD Australia to notify particular individuals and the Office of the Australian Information Commissioner about ‘eligible data breaches’. A data breach is eligible if it is likely to result in serious harm to any of the individuals to whom the personal or sensitive information relates. PCD Australia will make an objective assessment of whether a data breach is likely to result in serious harm and take remedial action according to its data breach response plan. See www.oaic.gov.au for further information.
4.17 Changes to our Privacy Policy
We welcome your questions and any suggestions you may have about our Privacy Policy.
We reserve the right to revise or supplement this Privacy Policy from time to time. Any updated version of this Privacy Policy will be posted on our website and will be effective from the date of posting. You should bookmark and periodically review this page to ensure that you are familiar with the most current version of this Privacy Policy so that you remain aware of the way we handle your personal information.
4.18 Contact
For any further information regarding privacy at PCDA, please email Secretary@pcdaustralia.org.au
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Approved by Board: April 2024
Review date: By March 2026