Privacy Policy

 

The Information We Collect In respect of issuing information which pertains to the condition Porphyria, such as literature, newsworthy events, webinars, research documents and updates issued by the SOUTH AFRICAN PORPHYRIA FOUNDATION via email or newsletter, your name, email address, postal address & telephone number will be captured.

Why We Need Your Information and How We Use It:


We rely on a number of legal bases to collect, use, and share your information, including the following:

•as needed to provide our services, such as when we use your information to provide support or newsworthy updates relevant to the condition known as Porphyria.

 •when you have provided your affirmative consent, which you may revoke at any time, such as by signing up for our mailing list;
 
Information Sharing and Disclosure


Information about our members is important for us to run the SOUTH AFRICAN PORPHYRIA FOUNDATION successfully. We share your personal information for very limited reasons and in limited circumstances, as follows:

•Compliance with laws. We may collect, use, retain, and share your information if we have a good faith belief that it is reasonably necessary to: (a) respond to legal process or to government requests; (b) enforce my agreements, terms and policies; (c) prevent, investigate, and address fraud and other illegal activity, security, or technical issues; or (d) protect the rights, property, and safety of members, users or our site  or others.


Data Retention


We retain your personal information only for as long as necessary to provide you with our services and as described in our Privacy Policy. However, we may also be required to retain this information to comply with any legal and regulatory obligations, to resolve disputes, and to enforce our agreements. We may store and process your information through third-party hosting services in the US and other jurisdictions. As a result, we may transfer your personal information to a jurisdiction with different data protection and government surveillance laws than your jurisdiction. If we are deemed to transfer information about you outside of the EU, we rely on Privacy Shield as the legal basis for the transfer, as Google Cloud is Privacy Shield certified.  

Your Rights


If you reside in certain territories, you have a number of rights in relation to your personal information. While some of these rights apply generally, certain rights apply only in certain limited cases. We describe these rights below:


•Access. You may have the right to access and receive a copy of the personal information held about you by contacting us using the contact information below.
•Change, restrict, delete. You may also have rights to change, restrict our use of, or delete your personal information. Absent exceptional circumstances (like where we are required to store data for legal reasons). We will generally delete your personal information upon request.
•Object. You can object to (i) our processing of some of your information based on our legitimate interests and (ii) receiving marketing messages from us after providing your express consent to receive them. In such cases, we will delete your personal information unless we have compelling and legitimate grounds to continue using that information or if it is needed for legal reasons.