FND – What Now? Non-Profit Company (NPC), Registration Number: 2024/319828/08, respects your privacy and is committed to protecting your personal information in accordance with South Africa's Protection of Personal Information Act, 4 of 2013 (POPIA).

 

This Privavcy Policy explains how we collect, use, store, and protect personal information provided through our website: https://www.fndwhatnow.com and through your interactions with our organisation.

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The POPI Act​

​The Protection of Personal Information Act, 4 of 2013 (POPIA) regulates how personal information is collected, processed, stored, shared, and protected in South Africa. It aims to ensure that personal information is handled lawfully and responsibly while safeguarding individuals’ privacy rights.

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Information Regulator of South Africa​

The Information Regulator of South Africa is the independent authority responsible for monitoring and enforcing compliance with POPIA and protecting individuals’ information rights.​​

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Information We Collect​

Depending on the nature of your interaction with us, we may collect the following information:

• Contact Information: Name, surname, email address, and contact number.

• Special Personal Information: Health-related information, including FND diagnosis, symptoms, and relevant healthcare information.

• Demographic Information: Age, gender, and general location, where relevant.

• Professional Information: Professional role, area of expertise, or other relevant details provided by healthcare professionals.

• Website Usage Information: Technical information such as IP address, browser type, pages visited, and website preferences, where collected.

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Special Personal Information

Under POPIA, special personal information includes certain sensitive categories of information, including health information, that receive additional legal protection.​​​

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Purpose of Collecting Your Information​

FND – What Now? NPC collects personal information relevant to your engagement with our organisation. The information requested may include your name, surname, email address, contact number, confirmation of an FND diagnosis, or area of expertise, depending on the nature and purpose of your interaction with us.

 

How We Use Your Information

We collect personal information relevant to your engagement with FND – What Now? NPC and request only information relevant to the purpose of that interaction.

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How We Use Your Information

Depending on the information provided and the nature of your engagement with us, we may use it to:

• Understand Lived Experiences: Better understand the needs and experiences of people diagnosed with Functional Neurological Disorder (FND).

• Coordinate Support Group Screening: Arrange introductory video calls as part of our membership intake process.

• Develop Resources: Inform the development of relevant FND resources and awareness initiatives.

• Provide Education and Peer Support: Support educational activities and peer support for people affected by FND and healthcare professionals.

• Collaborate for Public Benefit: Work with relevant organisations on initiatives that improve FND awareness, understanding, and support.

• Manage Organisational Processes: Maintain and improve our website and services and support organisational evaluation, reporting, and administration.

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Access to personal information is restricted to authorised persons, including the Information Officer, Audrey Bart, where required for their responsibilities.

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How We Protect and Store Your Personal Information (Data)

We take reasonable technical and organisational measures to protect personal information against loss, misuse, unauthorised access, or disclosure. Access is restricted to authorised persons and information is handled for its intended purpose, subject to applicable legal obligations.

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Where information is used for planning, reporting, or resource development, we aim to use aggregated or de-identified information wherever reasonably possible.

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We aim to minimise the collection and sharing of sensitive information and use third-party platforms only where necessary for our organisational activities.

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Our website is hosted by Wix.com, whose own privacy policies and security practices apply to its platform and services. We encourage you to review Wix’s relevant privacy and security information for further details.

 

Wix's Privacy and Security Measures

For more information about Wix’s privacy practices (link down below), data processing, and security measures, please consult the relevant resources available through Wix’s official website and Help Centre. 

• Wix Privacy Policy

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Your Rights

Under POPIA, you have the right, subject to applicable legal requirements, to:

• Request access to personal information, where applicable.

• Request the correction or deletion of your personal information, where applicable.

• Raise concerns about how your personal information ishandled by contacting our Information Officer.

• Lodge a complaint with the Information Regulator of South Africa if you believe your personal information is being handled unlawfully.

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Contact Us

If you have any questions about this Privacy Policy or how we personal information, please contact us:

Email:       fndwhatnow@gmail.com

Cell:          +27 (0)76 291 3442

Website: www.fndwhatnow.com
 

For more information about your rights under POPIA or to lodge a complaint, visit the Information Regulator of South Africa at https://inforegulator.org.za.​

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Updates to this Privacy Policy:

 

We may update this Privacy Policy (POPIA) from time to time. You may check this page for regular updates. For an update on our general Cookies Policy, visit our page:  Cookies Policy.

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Last updated: October 18, 2026