FSHD Global Research Foundation Limited
FSHD Global Research Foundation Limited (ABN 79 128 037 614) (FSHD Global, we, us or our) respects and acknowledges the importance of privacy. FSHD Global is compliant with the Australian Privacy Principles (APP) as contained within the Privacy Act 1988 (Cth) (the Act) when collecting, using, disclosing and managing your personal information.
FSHD Global operates the website fshdglobal.org (the Site).
This Privacy Policy (Policy) explains how we collect, hold, use and disclose personal information we receive from users of the Site.
By accessing or using the Site and providing personal information to us, you consent to FSHD Global collecting, holding, using and disclosing your personal information in accordance with this Policy, and you acknowledge to be bound by this Policy.
For the purposes of this Policy, the term “personal information” has the meaning given to it in the Act.
Please note that when you use a link contained in the Site and are redirected to other websites, those websites are not subject to our Policy, and you will need to contact those websites to find out about their privacy and security policies.
Collection
When registering to use the Site, and when using the Site, we will ask you to provide us with personally identifiable information that can be used to contact or identify you. Personal information may include, but is not limited to, your name, email address, phone number, residential address, business address, and credit card details.
Personal information is also collected directly through the Site, and also through Salesforce and Stripe, which are third party platforms, with the core purpose of processing donations and payments. All credit card details are encrypted and stored in Salesforce or in Commbank eVolve. Any credit card details that are received by FSHD Global from donors via email or paper donation, are inputted directly into the Salesforce or Stripe platforms and destroyed by FSHD Global immediately thereafter. Please note that Salesforce, Stripe and Commbank eVolve are not subject to our Policy, and you will need to contact these companies to find out about their privacy policies.
Client database details (excluding credit card details) are saved via google drive using mailchimp, an email marketing platform. These client database details are backed up daily to hard drive and saved on the FSHD Global server.
If you do not provide certain personal information to us, then we may not be able to provide some or all of the requested services to you (or information about those services) or engage with you in connection with the good work that we do.
Use
FSHD Global is an Australian not-for-profit organisation dedicated to finding a treatment and cure for Facioscapulohumeral Dystrophy (FSHD). FSHD Global has been solely formed to fund medical research projects in relation to FSHD. These research projects aim to create a better understanding of and to find appropriate treatment and a cure for FSHD. Donations received are used to fund medical research.
Information is collected for fundraising activities, including but not limited to, events and donations. Personal information, including credit card details, may be shared with corporate donors who aid in fundraising activities. FSHD Global staff and volunteers have access to donor details as part of their day-to-day work. Outside IT support staff have access by way of hosting website and supporting staff.
If you register for our newsletters, attend an event, or donate via the Site, the personal information that you supply will be collected. We may contact you or provide information in order to gather more details about your donation or to inform you of upcoming events.
We may also use your personal information to communicate with you about improvements, updates on medical research and new versions and features of the Site, and new services offered on the Site. You may “opt out” of receiving these communications at any time by using the “unsubscribe” link in emails, or by contacting our Privacy Officer, details of which are contained within this Policy.
We may also collect, use and disclose personal information in connection with lawful information requests from courts, government agencies and lawyers and in connection with legal proceedings, or suspected fraud, misconduct or unlawful activity.
Disclosure
We will not disclose personal information to third parties, other than for a purpose directly related to our activities.
In order to deliver our services to you, we may need to disclose personal information to agents and contractors who support the operation of our business, such as credit card processors and service providers for the purposes of email distribution.
Protection of Personal Information
We maintain standards and security procedures to prevent misuse, interference and loss, unauthorised access, modification or disclosure.
Personal information is held electronically on the information technology systems of FSHD Global and may only be accessed by its authorised employees and contractors who may require access in connection with the purposes described in this Policy. All computers of our employees (and contractors) are password protected.
Access to Personal Information
In the event that access to personal information we hold about you is requested, FSHD Global will endeavour to respond to that request as soon as reasonably practicable if and to the extent required by applicable law. If there is no applicable requirement under law for FSHD Global to provide you with access to personal information we hold about you, FSHD Global will respond if such disclosure is fair and reasonable at FSHD Global’s discretion. FSHD Global reserves the right to make an administrative charge to you if it is required to provide you with access to personal information we hold about you as outlined above.
If you wish to access the personal information we hold about you or request correction of it, most personal information can be updated and corrected directly by logging in to your account details on the Site. If there are aspects of personal information that cannot be updated directly, then you can request access and correction of your personal information by clicking on the “Contact Us” link on the Site.
Complaints
If you wish to make a complaint about how we have handled your personal information, please send a written complaint to the Privacy Officer, details below:
Privacy Officer
FSHD Global Research PO Box A296
Sydney South NSW 1235 Sydney NSW 2000
By email: admin@fshdglobal.org
FSHD Global will respond in writing within 30 days of receiving the complaint.
If the complaint remains unresolved, you have the option of notifying the Office of the Australian Information Commissioner (OAIC). Contact details can be found at OAIC’s website: oaic.gov.au
Changes to our Privacy Policy
FSHD Global may amend this Policy from time to time to ensure its currency with the changes in the domestic and international legal sphere. If FSHD Global makes changes, we will notify you by publishing them on the Site. We therefore encourage you to check the Policy from time to time. By continuing to use the Site, you agree to accept any changes we make to this Policy.