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Our Privacy Policy

1.            DEFINITIONS

1.1          "Associates" means the RDSA's shareholders, subsidiaries and the directors, employees and consultants of RDSA or of any of its subsidiaries.

1.2          “RDSA” means Rare Diseases South Africa, NPO 120-991.

1.3          "Cookie" means a small file that is placed on your device when you visit a Website. In this Policy, a reference to a "Cookie" includes analogous technologies such as web beacons and clear Graphic Interchange Format files ("GIFs").

1.4         "Operator" means any person or entity that Processes Personal Information on behalf of the Responsible Party.

1.5          "Personal Information" means information that is about any individual, or from which any individual is directly or indirectly identifiable, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that individual.

1.6         "POPI" means the Protection of Personal Information Act 4 of 2013.

1.7          "Process", "Processing" or "Processed" means anything that is done with any Personal Information, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.

1.8         "Responsible Party" means the entity that decides how and why Personal Information is Processed.

1.9         "Sensitive Personal Information" means Personal Information about race or ethnicity, political opinions, religious or philosophical beliefs, trade union membership, physical or mental health, sexual life, any actual or alleged criminal offences or penalties, national identification number, or any other information that may be deemed to be sensitive under applicable law.

1.10        "Service Provider" – third party providers of various services whom RDSA engages, including, but not limited to, providers of information technology, communication, file storage, data storage, copying, printing, accounting or auditing services, counsel, experts, investigators, RDSA’s insurers and professional advisors;

1.11         "Website" means any Website operated, or maintained, by RDSA or on RDSA’s behalf.


2.           INTRODUCTION

2.1          By providing RDSA with your Personal Information, you:

2.1.1       agree to this Policy and authorise us to process such information as set out herein; and

2.1.2       authorise RDSA, its Service Providers and other third parties to Process your Personal Information for the purposes stated in this Policy.

2.2         RDSA will not use your Personal Information for any other purpose than that set out in this Policy and will endeavour to protect your Personal Information that is in RDSA’s possession from unauthorised alteration, loss, disclosure or access.

2.3         Please note that RDSA may review and update this Policy from time to time.


3.1          RDSA may collect or obtain Personal Information about you:

3.1.1       directly from you;

3.1.2       in the course of RDSA’s relationship with you;

3.1.3      in the course of providing services to you;

3.1.4      when you make your Personal Information public;

3.1.5      when you visit and/or interact with RDSA’s Website or social media platforms;

3.1.6      when you interact with any third-party content or advertising on RDSA’s Website; or

3.1.7       when you visit RDSA’s premises.

3.2         RDSA may also receive Personal Information about you from third parties.

3.3         In addition to the above, RDSA may create Personal Information about you such as records of your communications and interactions with RDSA, including, but not limited to, your attendance at events or at interviews in the course of applying to RDSA for assistance, subscription to RDSA newsletter and/ or other mailings and interactions with RDSA.



4.1         RDSA may process the following categories of Personal Information about you:

4.1.1       personal details: name; and photograph;

4.1.2      demographic information: gender; date of birth / age; nationality; salutation; title; and language preferences;

4.1.3      identifier information: passport or national identity number; utility provider details; bank statements; tenancy agreements;

4.1.4      contact details: correspondence address; telephone number; email address; and details of your public social media profile(s);

4.1.5      Personal Information included in correspondence, documents, evidence or other materials that RDSA may Process in the course of providing goods or services;

4.1.6      attendance records: details of meetings and other events organised by or on behalf of RDSA that you have attended;

4.1.7       records of any consents you may have given, together with the date and time, means of consent and any related information;

4.1.8      payment details: billing address; payment method; bank account number or credit card number; invoice records; payment records; SWIFT details; IBAN details; payment amount; payment date; and records of cheques;

4.1.9      data relating to your visits to RDSA’s Website: your device type; operating system; browser type; browser settings; IP address; language settings; dates and times of connecting to RDSA’s Website; and other technical communications information;

4.1.10    employer details: where you interact with RDSA in your capacity as an employee of an organisation, the name, address, telephone number and email address of your employer, to the extent relevant; and

4.1.11     content and advertising data: records of your interactions with RDSA’s  online advertising and content, records of advertising and content displayed on pages displayed to you, and any interaction you may have had with such content or advertising (including, but not limited to, mouse hover, mouse clicks and any forms you complete).




5.1          Should RDSA be required to Process your Sensitive Personal Information, RDSA will do so in the ordinary course of business, for a legitimate purpose, and in accordance with applicable law.



6.1         RDSA will Process your Personal Information in the ordinary course of business.

6.2         RDSA will primarily use your Personal Information only for the purpose for which it was originally or primarily collected.

6.3         RDSA will use your Personal Information for a secondary purpose only if such purpose constitutes a legitimate interest and is closely related to the original or primary purpose for which the Personal Information was collected.

6.4         RDSA may subject your Personal Information to Processing during the course of various activities, including, without limitation, the following:

6.4.1      operating RDSA;

6.4.2      analysis, evaluation, review and collation of information in order to determine issues and potential disputes;

6.4.3     compliance with applicable laws and fraud prevention;

6.4.4     transfer of information to our Service Providers and other third parties; or

6.4.5     recruitment.

6.5         RDSA may process your Personal Information for relationship management and marketing purposes in relation to services (including, but not limited to, Processing that is necessary for the development and improvement of our services), for accounts management, and for marketing activities in order to establish, maintain and/or improve RDSA’s relationship with you and with RDSA’s Service Providers.

6.6         RDSA may also analyse your Personal Information for statistical purposes.

6.7         RDSA may process your Personal Information for internal management and management reporting purposes, including but not limited to:

6.7.1       conducting internal audits,

6.7.2      conducting internal investigations,

6.7.3      implementing internal business controls,

6.7.4      providing central processing facilities,

6.7.5      for insurance purposes and for management reporting analysis.

6.8         RDSA may Process your Personal Information for safety and security purposes.



7.1          RDSA may disclose your Personal Information to our Service Providers, for legitimate business purposes, in accordance with applicable law and subject to applicable professional and regulatory requirements regarding confidentiality.

7.2          In addition, RDSA may disclose your Personal Information:

7.2.1       if required by law;

7.2.2       to legal and regulatory authorities, upon request, or for the purposes of reporting any actual or suspected breach of applicable law or regulation;

7.2.3      third party Operators (including, but not limited to, data processors such as providers of data hosting services and document review technology and services), located anywhere in the world, subject to clause 7.3;

7.2.4      to any relevant party for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, including, but not limited to, safeguarding against, and the prevention of threats to, public security; and

7.2.5      to any relevant third-party provider, where RDSA Website uses third party advertising, plugins or content.

7.3         Should RDSA engage a third-party Operator to Process any of your Personal Information, RDSA recognizes that any Operator who is in a foreign country must be subject to a law, binding corporate rules or binding agreements which provide an adequate level of protection similar to POPI.

7.4         RDSA will review its relationships with Operators RDSA engages with and, to the extent required by any applicable law if force, RDSA will require such Operators to be bound by contractual obligations to:

7.4.1       only Process such Personal Information in accordance with RDSA’s prior written instructions; and

7.4.2      use appropriate measures to protect the confidentiality and security of such Personal Information.



8.1         RDSA may transfer Personal Information to recipients outside of the Republic of South Africa.

8.2         Subject to clause 8.1, Personal Information may be transferred outside of the Republic of South Africa provided that the country to which the data is transferred has adopted a law that provides for an adequate level of protection substantially similar to POPI, the Operator/third party undertakes to protect the Personal Information in line with applicable data protection legislation and the transfer is necessary in order to provide the goods or services to RDSA’s clients


9.           DATA SECURITY

9.1         RDSA shall implement the appropriate technical and organisational security measures to protect your Personal Information that is in RDSA’s possession against accidental or unlawful destruction, loss, alteration, unauthorised disclosure, unauthorised access, in accordance with applicable law.

9.2         Where there are reasonable grounds to believe that your Personal Information that is in RDSA’s possession has been accessed or acquired by any unauthorised person, RDSA will notify the relevant regulator and you, unless a public body responsible for detection, prevention or investigation of offences or the relevant regulator informs RDSA that notifying you will impede a criminal investigation.

9.3         As the internet is an open system, the transmission of information via the internet is not completely secure.

9.4         Although RDSA will implement all reasonable measures to protect your Personal Information that is in RDSA’s possession, RDSA cannot guarantee the security of any information transmitted using the internet and RDSA cannot be held liable for any loss of privacy occurring during the course of such transmission.


10.         DATA ACCURACY

10.1        The Personal Information provided to RDSA should be accurate, complete and up to date.

10.2       Should Personal Information change, the onus is on the provider of such data to notify RDSA of the change and provide RDSA with the accurate data.



11.1         RDSA will restrict its processing of Personal Information to data which is sufficient for the fulfilment of the primary purpose and applicable legitimate purpose for which it was collected.


12.          DATA RETENTION

12.1        RDSA shall only retain and store Personal Information for the period for which the data is required to serve its primary purpose or a legitimate interest or for the period required to comply with an applicable legal requirement, whichever is longer.



13.1        You may have rights under the South African and other laws to have access to your Personal Information and to ask RDSA to rectify, erase and restrict the use of your Personal Information.

13.2        You may also have rights to object to your Personal Information being used, to ask for the transfer of Personal Information you have made available to RDSA and to withdraw consent to the use of your Personal Information.



14.1        RDSA may Process your Personal Information by RDSA’s use of Cookies and similar technologies.

14.2       When you visit RDSA’s Website, RDSA may place Cookies onto your device, or read Cookies already on your device, subject always to obtaining your consent, where required, in accordance with applicable law.

14.3       RDSA use Cookies to record information about your device, your browser and, in some cases, your preferences and browsing habits.



15.1        RDSA may Process your Personal Information for the purposes of providing you with information regarding services that may be of interest to you.

15.2        You may unsubscribe for free at any time.

15.3       If you currently receive marketing information from us which you would prefer not to receive in the future please email the Information Officer at



16.1        You may contact RDSA at:

The Information Officer

+27 10 594 3844

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