Privacy Policy 2022

Our Mission

Our mission is to find a cure for Duchenne and Becker musculardystrophy. We strive to achieve this by funding research and clinical trials,improving care and funding nurses. Save Our Sons believes every Australianchild impacted by Duchenne and Becker muscular dystrophy should have everyopportunity to thrive. We do this by fundraising to provide innovative programsand services to develop life skills and strengthen the wellbeing of allaffected by Duchenne and Becker muscular dystrophy and their families.

Save Our Sons Privacy commitment

Save Our Sons respects and is committed to protecting theprivacy of the people whose personal information it collects. We are bound bythe Australian Privacy Principles in the Privacy Act 1988 (Cth).

We may update our Privacy Policy at any time to reflect changesrequired to provide our services.

What is Personal Information?

Personal information means information or an opinion about aspecific person who is identified by the information, or whose identity can beeasily ascertained from the information. Examples of Personal Information thatwe may collect include your name, address, tax file number, credit information.

Whose Personal Information do we collect?

Save Our Sons collects information from the children andfamilies we assist, medical professionals, donors, fundraisers, participants atour events, volunteers, members and Directors of Save Our Sons and prospectiveemployees.

For more specific information, as to the information we collectand how this information is used please refer to the Save Our Sons CollectionStatement.

Collectingpersonal information of involved persons

•                    • Where possible Save Our Sons collects personalinformation directly from involved persons, in person, on the telephone, viamail, email or online.

•                    • Some information is also collected from thirdparties such as contractors, health professionals, government bodies and socialservices.

•                    • In circumstances where information has beencollected from third parties, and it is not clear whether we have permissionfrom the individual to disclose the information, Save Our Sons takes reasonablesteps to obtain such permission and ensures the purposes for which informationis collected is made clear. Save Our Sons collects information for severalpurposes, including but not limited to: ➢ marketing;

•                    ➢fundraising;

•                    ➢providing services and programs; and

•                    ➢health promotion.

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Why do we collectPersonal information?

Save Our Sons collects, holds, uses and discloses personalinformation:

 Administration: to enable us to conduct fundraisers,and administer your participation in these events;

 Marketing: to communicate with you about ourinitiatives, and if you provide your consent, to use your photograph and/orinformation you provide in an interview to promote our initiatives; and

•                     Compliance: to comply with our legal obligations. •it has been provided;

•                    • it is reasonably related to secondary purposes,which are within the contemplation of the parties (and are directly related, ifthe information is sensitive information);

•                    • any other purpose you have consented to; and

•        • any other purpose permitted under the Privacy Act1988 (Cth). This may include: ➢ verification of identity;

•        ➢ toenable Save Our Sons to establish and administer its services;

•        ➢for the purposes of managing relationships with families;

•        ➢handling enquiries

•        ➢ tohandle communications with individuals, agencies or representatives;

•        ➢tocomply with legal and regulatory obligations including any recommendation,request, rule, order or direction of any regulatory, governmental authority,court or tribunal;

•        ➢toconduct marketing activities, including research and analysis in relation toCamp Quality;

•        ➢ toprovide electronic communications;

•        ➢toconduct recruitment processes, including the assessment of suitability forfuture roles; and

•        ➢any other purposes related to the above.

•        ▪ which it has been provided;

•        ▪ reasonably related secondary purposes which arewithin the contemplation of the parties (and are directly related if sensitiveinformation);

•        ▪ any other purpose you have consented to; and

•        ▪ any other purpose permitted under the Privacy Act1988 (Cth).

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Use of personal information

Save Our Sons uses personal information for the purpose forwhich:

Disclosure of personal information

Save Our Sons discloses personal information for the purposesfor:

•        ▪ an employer;

•        ▪ a bank or financial institution;

•        ▪ to third party suppliers and vendors to the extentnecessary for the establishment, provision, and administration of theapplicable services

•        ▪ an insurer;

•        ▪ personnel, agents, contractors and service providersinvolved in providing managing or administering services;

•        ▪ companies who provide information and infrastructuresystems to Save Our Sons, including cloud storage providers;

•        ▪ anyone acting on an individual’s behalf;

•        ▪ professional advisors, consultants, accountants,lawyers and auditors;

•        ▪ to anyone to whom consent has been provided;

•        ▪ where required to do so by law; and

•        ▪ for any other purpose related to the above.

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Depending on the services, or the relationship to Save Our Sons,your personal information may be disclosed to:

Save Our Sons will not, without consent, disclose personalinformation for any purpose (a secondary purpose) other than for the mainpurpose (primary purpose) of fulfilling Save Our Sons’ commitments toapplicants, except where:

 it is required orauthorised by law or for purposes of law enforcement and matters directlyrelated to law enforcement or the prevention of unlawful activity;

 the secondary purpose isrelated to the primary purpose (or directly related when sensitive informationis involved) and there is a reasonable expectation that Save Our Sons would useor disclose the information in the circumstances;

 Save Our Sons reasonably believes it is necessary toprevent any serious and imminent threat to any person's life, health or safetyor the public's health or safety. Save Our Sons will not otherwise discloseyour personal information to any other party without your consent.

What is Sensitive information

Sensitive information includes information which may notidentify a specific person but includes important details, such as specifichealth or medical information, a person’s race, religion, political opinions,affiliations, philosophy, memberships or genetic information.

Whose sensitive information do we collect

We may collect sensitive information from the children andfamilies we assist. We collect sensitive information about you or your childrelating to your health or your child's health.

Why do we collect sensitive information?

For more specific information, as to the information we collectand how this information is used please refer to the Save Our Sons CollectionStatement.

Website usage information and cookies

When you access our website, we may use cookies. Cookies aresmall data files which ask permission to be placed on your computer’s harddrive. Cookies collect personal information automatically from you including:your IP address and or domain name, your operating system (type of browser andplatform) and the date, time and length of your visit to the website. Cookiesare used by us to enhance your user experience and deliver content relevant toyour behaviour.

No personally identifiable information is obtained. A cookiedoes not give us access to your computer or any information about you otherthan data you choose to share with us. You can choose to accept or declinecookies initially and through the settings on your browser.

Access to and updating your Personal Information

Save Our Sons seeks to ensure that all personal informationcollected and stored in its files and database systems is correct and accurate.Individuals may at any time request access to, or correction of, the personalinformation Save Our Sons holds by contacting the Privacy Officer in the HeadOffice on (02) 9554 6111 or info@saveoursons.org.au. Save Our Sons willendeavour to meet or advise of the outcome of such a request within fivebusiness days of receipt.

Data Security

Save Our Sons takes reasonable steps to protect the security ofthe personal information and sensitive information it holds or that it engagesservice providers to hold on its behalf, from misuse, interference, loss,unauthorised access, modification or disclosure.

These steps include:

Save Our Sons takes reasonable steps to ensure that when theinformation is no longer needed, it is destroyed or permanently renderedanonymous.

Confidentiality

Save Our Sons will only disclose information that we hold aboutyou to the extent required by law, as outlined in the Save Our Sons CollectionStatement and for the purposes of achieving our Mission.

We will adhere to the Privacy Act 1988, including the NationalPrivacy Act Principles, when we collect, use, disclose, store, provide accessto, or otherwise deal with your personal information.

Complaints

For any privacy issues or concerns, including a complaint thatSave Our Sons has breached the Australian Privacy Principles, contact ourPrivacy Officer in the Head Office on (02) 9554 6111 orinfo@saveoursons.org.au.

We may request that you make your complaint in writing. Save OurSons will respond to your complaints within a reasonable period (usually 30days). An unresolved complaint may be made to the Office of the AustralianInformation Commissioner (visit oaic.gov.au for further information).

 Administration: toenable you or members of your family to be involved with our care platforms orbe involved in other programs run by us, to receive financial or domesticsupport, and to enable us to communicate with you about our services;

 Marketing: tocommunicate with you about our initiatives, and if you or a parent/guardianprovides consent, to use photographs and/or information provides in aninterview to promote our initiatives;

 Support Services: toprovide medical assistance to you while participating in our programs; and

 Compliance: to comply with our legal obligations.

using PCIDSS (payment card industry data security standards)software and processes; and restrictions on the employees who have access topersonal files.

• Administration: toenable you or members of your family to attend our camps or be involved inother programs run by us, to receive financial or domestic support, and toenable us to communicate with you about our services;

• Marketing: tocommunicate with you about our initiatives, and if you or a parent/guardianprovides consent, to use photographs and/or information provided in aninterview to promote our initiatives;

• Support Services: toprovide medical assistance to you while participating in our programs; and

• Compliance: to complywith our legal obligations.

• Patients and families ofpatients: but only if you have volunteered to be a companion to a patient;

• Internal supportservices: employees, volunteers and Board Members of Save Our Sons;

• Contractors and serviceproviders: who provide services to Save Our Sons and who provide medicalassistance to those assisted by Save Our Sons;

• Third parties required by law including the AustralianFederal Police to conduct working with children checks; and anyone else youauthorise.

Children and Families - Privacy Collection Statement

What information do we collect about you?

We collect sensitive information about you or your childrelating to your health or your child's health.

We also generally collect the following personal informationabout you or your child: name, date of birth, weight, phone number, address andemail address, gender and information about siblings, school records, and ifyou provide consent, your photograph or your child's photograph and informationyou or your child provide in an interview.

How do we collect your personal information?

With your consent, we collect your information from thirdparties such as social workers, guardians and siblings. We also collect yourinformation or your child's information from you when you provide informationto us in writing, via email, via the telephone or on our website when applying,enquiring, or registering for camp/activity opportunities with Save Our Sons.We hold your and your child's personal information for the duration of yourrelationship with Save Our Sons or as required by law.

Why do we need your personal information?

Save Our Sons collects, holds, uses and discloses personalinformation relating to you and your child:

To whom does Save Our Sons disclose personal information?

Save Our Sons discloses your personal information to:

Our privacy policy contains further informationabout how Save Our Sons may collect, use and manage personal information,including information about how you may access and correct your personalinformation or make a complaint about a breach of privacy and how we will dealwith such a complaint. Our Privacy Statement is availablehttps://www.saveoursons.org.au or from us on request (at the contact detailsbelow).