Privacy Policy

Privacy Policy

Motor Neurone Disease Association of South Africa

Effective Date: 25 August 2025

Introduction

The Motor Neurone Disease Association of South Africa (“MNDA SA,” “we,” “us,” or “our”) is committed to protecting your privacy and personal information. This Privacy Policy explains how we collect, use, disclose, and safeguard your information when you visit our website, use our services, or interact with us.

We understand the sensitive nature of the information shared with us and are committed to maintaining the highest standards of confidentiality and data protection.

Information We Collect

Personal Information You Provide

We may collect personal information that you voluntarily provide to us, including:

  • Contact Information: Name, email address, phone number, postal address
  • Support Requests: Information about MND diagnosis, care needs, family circumstances
  • Healthcare Information: Medical information relevant to MND support services (collected only with explicit consent)
  • Donation Information: Billing information, donation amounts, payment preferences
  • Communication Preferences: Newsletter subscriptions, communication methods
  • Demographic Information: Age, location, caregiver status (for service customization)
  • Testimonials and Stories: Personal experiences shared with permission for awareness purposes

Information Collected Automatically

When you visit our website, we may automatically collect:

  • Technical Information: IP address, browser type, operating system, device information
  • Usage Data: Pages visited, time spent on site, referral sources, click patterns
  • Cookies and Similar Technologies: Information stored on your device to enhance website functionality

How We Use Your Information

We use your personal information for the following purposes:

Service Provision

  • Connecting you with appropriate Lay Advisors and support services
  • Providing information and resources relevant to your needs
  • Coordinating equipment loans and assistance programs
  • Facilitating communication with healthcare professionals in our network

Communication

  • Responding to inquiries and support requests
  • Sending newsletters and updates about our services and MND-related information
  • Providing appointment reminders and follow-up communications
  • Sharing relevant educational materials and resources

Donations and Fundraising

  • Processing donations through our secure payment systems
  • Issuing tax-deductible receipts
  • Acknowledging contributions and providing donor updates
  • Managing fundraising events and campaigns

Improvement and Analytics

  • Analyzing website usage to improve user experience
  • Evaluating the effectiveness of our services and programs
  • Conducting research to better serve the MND community (with anonymized data)

Legal and Administrative

  • Complying with legal obligations and regulations
  • Protecting our rights and the safety of our users
  • Maintaining accurate records for organizational purposes

Third-Party Services

Payment Processing

We use PayFast to process online donations and payments. PayFast processes payment information according to their own privacy policy and security standards. We do not store complete credit card information on our servers.

Donation Management

We use the Charitable plugin to manage donations and donor information. This plugin helps us track contributions, generate receipts, and manage donor communications while maintaining security standards.

Other Third-Party Services

We may use other trusted third-party services for:

  • Email marketing and newsletter distribution
  • Website analytics and performance monitoring
  • Cloud storage and data backup services
  • Customer relationship management

All third-party service providers are required to maintain appropriate security measures and use your information only for the services they provide to us.

Information Sharing and Disclosure

We do not sell, trade, or rent your personal information to third parties. We may share your information in the following limited circumstances:

With Your Consent

  • Connecting you with healthcare professionals or service providers in our network
  • Sharing your story or testimonial for awareness purposes (only with explicit permission)
  • Referring you to other organizations that may provide relevant support

Service Providers

  • Trusted third parties who assist us in operating our website and providing services
  • Professional advisors including lawyers, accountants, and auditors
  • IT service providers who help maintain our systems and security

Legal Requirements

  • When required by law or legal process
  • To protect the rights, property, or safety of MNDA SA, our users, or others
  • In connection with legal proceedings or investigations

Organizational Changes

  • In the event of a merger, acquisition, or sale of assets (with appropriate notice)

Data Security

We implement appropriate technical and organizational measures to protect your personal information against unauthorized access, alteration, disclosure, or destruction. These measures include:

  • Secure socket layer (SSL) encryption for data transmission
  • Restricted access to personal information on a need-to-know basis
  • Regular security assessments and updates
  • Secure storage and backup procedures
  • Staff training on data protection and confidentiality

However, no method of transmission over the internet or electronic storage is 100% secure, and we cannot guarantee absolute security.

Data Retention

We retain your personal information only for as long as necessary to fulfill the purposes for which it was collected, including:

  • Support service records: Maintained while you receive services and for a reasonable period thereafter
  • Donation records: Kept for tax and legal compliance requirements (typically 7 years)
  • Marketing communications: Until you unsubscribe or we no longer have a legitimate interest
  • Website usage data: Typically retained for 2-3 years for analytics purposes

Your Rights

Under South African data protection laws, you have certain rights regarding your personal information:

Access and Correction

  • Request access to the personal information we hold about you
  • Request correction of inaccurate or incomplete information
  • Update your contact preferences and personal details

Deletion and Restriction

  • Request deletion of your personal information (subject to legal and legitimate business requirements)
  • Request restriction of processing in certain circumstances
  • Object to processing based on legitimate interests

Data Portability

  • Request a copy of your personal information in a structured, machine-readable format
  • Transfer your information to another organization (where technically feasible)

Communication Preferences

  • Unsubscribe from marketing communications at any time
  • Choose your preferred methods and frequency of communication
  • Opt out of certain data processing activities

To exercise any of these rights, please contact us using the information provided below.

Cookies and Website Technologies

Our website uses cookies and similar technologies to enhance your browsing experience. We use:

Essential Cookies

Required for basic website functionality, including:

  • Session management and security
  • Form submission and error handling
  • Accessibility features

Analytics Cookies

Help us understand how visitors use our website, including:

  • Page views and popular content
  • User navigation patterns
  • Website performance metrics

Marketing Cookies

Support our outreach and fundraising efforts, including:

  • Social media integration
  • Donation tracking and optimization
  • Targeted content delivery

You can control cookie preferences through your browser settings, though disabling certain cookies may affect website functionality.

Children’s Privacy

Our services are not specifically directed to children under 18. However, we recognize that young people may be affected by MND in their families. When we collect information from or about minors, we do so only with appropriate parental or guardian consent and take extra precautions to protect their privacy.

International Data Transfers

Your information may be processed and stored outside of South Africa when we use international service providers. In such cases, we ensure appropriate safeguards are in place to protect your information according to South African data protection standards.

Changes to This Privacy Policy

We may update this Privacy Policy periodically to reflect changes in our practices, services, or legal requirements. We will notify you of significant changes by:

  • Posting the updated policy on our website with a new effective date
  • Sending email notifications to registered users for material changes
  • Providing notice through our website or services

We encourage you to review this Privacy Policy regularly to stay informed about how we protect your information.

Contact Us

If you have any questions, concerns, or requests regarding this Privacy Policy or our data practices, please contact us:

Email: info@mnda.org.za

We are committed to addressing your concerns promptly and transparently. If you are not satisfied with our response, you may have the right to lodge a complaint with the Information Regulator of South Africa.

This Privacy Policy was last updated on 25 August 2025.