PRIVACY POLICY
Who We Are…
Our team is made up of professionals, friends and families that are committed to helping those of us who have rare and more complex needs. We are passionate about CDD (CDKL5 Deficiency Disorder), and rare disease advocacy. We believe all people have the same rights even if they are unable to speak up for themselves.
Our website is: https://afcr.org.au
When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection. An anonymized string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service privacy policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.
If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year. If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser. When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed. If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website. These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.
How Long We Retain Your Data…
If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognize and approve any follow-up comments automatically instead of holding them in a moderation queue. For users that register on our website (if any), we also store the personal information they provide in their user profile. All users can see, edit, or delete their personal information at any time (except they cannot change their username). Website administrators can also see and edit that information.
If you request a password reset, your IP address will be
included in the reset email.
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.
Visitor comments may be checked through an automated spam detection service.
Privacy Policy…
Australian Foundation for CDKL5 Research Limited. This Privacy Policy sets out our commitment to protect your personal information provided to us, or otherwise collected by us. In this Privacy Policy, we, us or our means The Australian Foundation for CDKL5 Research Limited.
Personal information is collected primarily to provide services to you. In this Privacy Policy, services mean, advocacy, advice, information, Nursing, Disability Support work, therapy, or other services as stated in your service agreement. In this Privacy Policy, ‘you’ means the client, or the client’s parent/legal guardian if under the age of 18 years.
When used in this policy, ‘personal information’ is the same definition as per the Privacy Act 1988. We may collect the following types of personal information from you with your consent:
- Name
- Immediate family names (parent and/or guardian)
- Address and postcode
- Email address (parent and/or guardian)
- Phone number (parent and/or guardian)
- Gender in any form and identity you choose
- Age and your Date of Birth
- Relevant medical history, diagnoses or conditions
- NDIS Participant number and current plan dates
- NDIS fund source I.e., Agency, Plan or Self-managed.
- Allied Health, team care providers involved in your care
- Details of all supports we will provide.
Collection of your personal information can occur when you communicate with us directly (in person, by telephone, via email). If you access Disability Support Coordination, your coordinator may provide us with some of this information by communicating with us directly (in person, via telephone or email).
Sensitive information is a subset of personal information that is given a higher level of protection under the Australian Privacy Principles. Sensitive information means information relating to your racial or ethnic origin, political opinions, religion, trade union or other professional associations or memberships, philosophical beliefs, sexual orientation or practices, criminal records, health information or biometric information. It is our policy to gather sensitive information only for reasonably and necessary purposes for participating relevant functions or activities. We will always get your consent and provide explanation to help you decide and feel safe to do so.
We may use your personal information in a de-identified form (de-identification is a process by which a collection of data or information is altered to remove personal identifiers and personal information) to assist us in running our business. We may also provide de-identified information in aggregated form, to third parties. When your personal information is included in de-identified, aggregated data, it is not possible to identify you or anything about you from that data.
Storage And Security…
We are committed to ensuring that the personal information we collect is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure your personal information and protect it from misuse, interference, loss and unauthorised access, modification and disclosure. We cannot guarantee the security of any information that is transmitted to or, by us over the Internet. The transmission and exchange of information is carried out at your own risk. Although we take measures to safeguard against unauthorised disclosures of information, we cannot assure you that the personal information we collect will not be disclosed in a manner that is inconsistent with this Privacy Policy.
If we are unable to collect your personal information, some, or all the following may occur:
- We may be unable to communicate with you or provide information about any requested service information that you.
- We may be unable to provide a service to you.
- Your experience when interacting with us may be delayed or not as efficient as you may expect.
- Students on placement with us (with your written consent).
- Your personal information may be disclosed in connection to:
- Your other allied health providers (with your verbal consent).
- In progress reports as per reporting requirements of your funding (e.g., NDIS).
- If required by law, to any person authorised by such law.
If you submit a form via our website, just an email address is required to ensure you receive a reply. No other information is required or kept from our website form submissions.
Our Site may contain links to other websites. We do not have any control over those websites, and we are not responsible for the protection and privacy of any personal information which you provide whilst visiting those websites. Those websites are not governed by this Privacy Policy.
Your Rights And Controlling Your Personal Information
Amendments
We may, at any time and at our discretion, vary this Privacy Policy by publishing the amended Privacy Policy on our Site. We recommend you check our Site regularly to ensure you are aware of our current Privacy Policy.
Please read this Privacy Policy carefully. By providing personal information to us, you consent to us collecting, holding, using and disclosing your personal information in accordance with this Privacy Policy. You do not have to provide personal information to us, however, if you do not, it may affect the services offered.
If we receive personal information about you from a third party, we will protect it as set out in this Privacy Policy. If you are a third party providing personal information about somebody else, you represent and warrant that you have such person’s consent to provide the personal information to us.
You may choose to restrict the collection or use of your personal information.
You may request details of the personal information that we hold about you.
If you believe that any information, we hold about you is inaccurate, out of date, incomplete, irrelevant or misleading, please contact us using the details below. We will take reasonable steps to correct any information found to be inaccurate, incomplete, misleading or out of date.
If you believe that we have breached the Australian Privacy Principles and wish to make a complaint, please contact us via [email protected] or by one of the options listed below in the footer, and provide us with full details of the alleged breach. We will promptly investigate your complaint and respond to you, in writing, setting out the outcome of our investigation and the steps we will take to deal with your complaint.
