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Privacy Policy

This Privacy Policy applies to all personal information collected, used, disclosed and otherwise handled by Swedish Orphan Biovitrum AB (Registration No. 556038-9321) or Swedish Orphan Biovitrum Pty Ltd (ABN 14 645 396 532) (together, "Sobi"). Please read this Privacy Policy carefully and feel free to contact us if you have any questions. 

This Privacy Policy explains what personal information (meaning any information relating to an identified or identifiable person) may be collected and processed about you, and how we use that information. It includes a description of your data privacy rights. 

Kinds of personal information that we collect and hold

The types of personal information Sobi may collect and hold includes (but is not limited to):

  • name;
  • date of birth;
  • gender;
  • residential addresses;
  • business addresses;
  • email addresses;
  • contact telephone numbers;
  • country of residence;
  • identification details (e.g. student card; APHRA number);
  • records of written or verbal contact with Sobi, including voice recordings of telephone conversations you have had with us
  • photos of individuals;
  • testimonials or opinions;
  • financial information, such as bank account or credit card details;
  • details about an enquiry or an adverse event report;
  • information about your health including details of your vaccination history, medical conditions, medical treatment you have received, our products that have been supplied to you;
  • healthcare provider professional details (e.g. qualifications, specialty), details on your business/practice, and/or details of your dealings with us; and/or
  • CV details and work experience if you had applied for an employment position

he nature and amount of information collected will depend on the purpose for which it was collected

How we collect and hold personal information

The way in which we collect personal information when provided by you includes:

  • when you register on our websites;
  • submit information through a contact form, either hardcopy or digital;
  • attend our premises;
  • make a medical enquiry or provide information in relation to an adverse event report or product complaint;
  • give information to a Sobi representative;
  • attend conferences, appear on expert panels, attend educational seminars, or are involved in disease awareness or disease management programs;
  • order and purchase goods and services from us;
  • provide services to us;
  • complete the Empaveli® (pegcetacoplan) Early Access Program Patient Enrolment and Consent Form;
  • enrol and participate in any Patient Support Program
  • provide a testimonial, a survey response or are a part of a focus group;
  • participate in expert panels or educational events;
  • interact with us in relation to employment; and/or
  • contact us directly by telephone, mail, email, online or by any digital form

Most of the personal information we hold about you will be from your direct dealings with us.  We may also collect your personal information (including sensitive health information) from a third party such as your health provider or our program providers, where you have consented to your information being provided to us.

We will store your personal information on a cloud server with a third party, in hard copies, or with our service providers.

Purposes for which Sobi collects and handles personal information

Some personal data provided by you will be processed by Sobi after receiving your consent to the processing. In such case we will provide you with additional information related to the specific case and ask you to provide consent prior processing of such personal data. 

The purposes for which we collect, hold, use and disclose your personal information include:

  • to maintain a record of medical enquiries, complaints and adverse event reports relating to our products and reporting these to relevant regulatory bodies (e.g. Therapeutic Goods Administration);
  • to respond to your questions or requests for information about our products and services;
  • to monitor the safety and efficacy of our products;
  • manage your requests for products and services including delivery, processing payments, providing refunds, and incentives;
  • managing, planning and arranging meetings between healthcare practitioners, Health Consumer Organisations and Sobi representatives; to administer the Empaveli® (pegcetacoplan) Early Access Program (EAP) and other patient support programs
  • to send reminders to physicians regarding their patients' vaccination statuses as part of the  controlled access programs for our medicines;
  • to involve health professionals/investigators (and people who assist them) in clinical trials;
  • to improve our operational processes, enhance your customer experience and to monitor and review our compliance with relevant regulations and codes of conduct in our dealings with you;
  • meet our legal obligations and to notify you of matters that we are required to do so by law (such as product recalls);
  • interact with Regulators or other Government agencies;
  • manage and resolve any legal or commercial complaints and issues;
  • to consider your application for employment
  • by placing cookies on your device to understand how visitors engage with and navigate our website to customise and improve our website and offer our visitors a more personalised user experience by delivering content and functionality. For more information about how we use cookies for this purpose, what cookies are and how you may choose to remove cookies from your device, please read our Use of Cookies page.
  • for other purposes that may be detailed on the website or mobile application or otherwise agreed between Sobi and you.
Direct marketing 

We will not use your personal information for marketing activities unless we are permitted to do so under the Privacy Act 1988 (Cth). You may elect to opt out of receiving communications regarding our products and services at any time by contacting us at [email protected]

Transfer of data outside Australia

This website is owned and operated by Sobi in Australia, but the information you provide may be accessible or transferred to other Sobi entities, including Sobi in the United Kingdom, Germany, Sweden and Switzerland, and other recipients in other countries, such as vendors or suppliers. The level of legal protection for personal data is not the same in all countries and may not provide the same level of protection as the data protection laws in Australia. You may contact us at [email protected] if you have any questions about the methods we use to safeguard any personal information transferred outside Australia.

Security of personal information 

We take reasonable steps to protect your personal information from loss, misuse, unauthorised access, disclosure, alteration or destruction by using security precautions that reflect industry standard protection. However, no data transmission over the Internet can be guaranteed to be completely secure. As a result, to the extent permitted under applicable law, we make no warranty, express or implied, concerning the security or integrity of any personal information.

Access and correction

You will at any time have the right to access your personal information and to request to have it rectified. Contact us at [email protected] if you would like to access and/or seek correction of the personal information we hold about you.

Questions & complaints

If you have any questions, concerns or complaints about this Privacy Policy, or how we handle your personal information, please email our Privacy Officer at: [email protected] 

Once a complaint has been lodged, the Privacy Officer will respond to you as soon as possible. 
You may also lodge a complaint with the Office of the Australian Information Commissioner by telephone: 1300 363 992 or email: [email protected]

In Australia, you can also make general enquiries via phone or email using the details below:

Amendments to this Privacy Policy 

We may update this Privacy Policy from time to time.