Privacy Policy

Canadian CdLS Foundation

Effective Date: November 12, 2026

Applies to: Canadian CdLS Foundation website, branded mobile applications, and associated digital services.

1. Our Commitment to Privacy

The Canadian CdLS Foundation ("the Foundation," "we," "our," or "us") is a registered Canadian charitable organization dedicated to supporting individuals with Cornelia de Lange syndrome (CdLS), their families, caregivers, healthcare professionals, and the broader CdLS community.

We recognize that our community includes children, adults with disabilities, and individuals with complex medical and developmental needs. Protecting personal information, maintaining confidentiality, and respecting individual dignity are fundamental to our work.

This Privacy Policy explains how we collect, use, store, share, and protect personal information when individuals access our website, mobile applications, educational resources, community features, and support services.

We are committed to handling personal information responsibly and in accordance with applicable Canadian privacy legislation and other privacy laws where relevant.

2. Information We Collect

Depending on how you interact with the Foundation, we may collect the following categories of information.

Personal and contact information

Name and preferred name
Email address and telephone number
Country, province, or general location
Account registration information
Communication preferences
Information voluntarily provided through registration or contact forms

Health and disability-related information

When individuals or families request support, participate in consultations, or voluntarily share experiences, we may receive information about:

CdLS diagnosis and genetic findings
Medical conditions and healthcare needs
Developmental and communication needs
Treatments, therapies, and support services
Educational and daily living support requirements
Family and caregiver experiences

We recognize that health, genetic, and disability-related information is particularly sensitive and requires enhanced protection.

Community information

When participating in app community features, users may voluntarily share:

Profile information
Messages and discussion posts
Photographs and videos
Comments and responses
Community experiences and personal stories

Technical information

Our website and mobile app service providers may process technical information such as:

Device type and operating system
Internet Protocol (IP) address
App usage and performance information
Device identifiers where applicable
Diagnostic information and error reports
Cookies and similar technologies on our website

We seek to limit information collection to what is reasonably necessary for the services provided.

3. How We Use Personal Information

We use personal information for the following purposes:

Creating and maintaining community member accounts
Providing Foundation programs, services, and family support
Responding to inquiries and consultation requests
Facilitating community discussions and connections
Providing educational materials and clinical resources
Managing events, webinars, and learning opportunities
Sending Foundation news, announcements, and notifications
Processing donations and related records
Improving accessibility, functionality, and service quality
Protecting community members and maintaining platform security
Meeting applicable legal, regulatory, and charitable reporting obligations

We do not sell personal information.

We do not use personal health information for targeted commercial advertising.

4. Sensitive Health Information and Clinical Consultations

The Foundation provides educational resources, family guidance, advocacy, and clinical consultation support.

Information shared during a private consultation is treated as confidential and is not intentionally published in community discussions or shared with other members without appropriate authorization.

We may use information provided during consultations to respond to inquiries, coordinate appropriate support, and maintain necessary service records.

Where collaboration with healthcare professionals or other organizations is appropriate, we will seek consent or another applicable legal authorization before sharing identifiable health information, except where disclosure is required or permitted by law.

Our mobile app is intended primarily for community connection, education, and support. It is not an emergency medical service or a substitute for individualized medical assessment and treatment.

Members should avoid posting detailed medical records, genetic reports, identifying documents, or other highly sensitive information in public or group discussions.

5. Community Participation and Visibility

Our mobile app may offer member profiles, discussion groups, comments, messages, and other community features.

Information shared in a community area may be visible to other members according to the privacy settings and access controls of that area.

Members should understand that other participants may be able to save, copy, or capture information they can view.

We encourage members to respect the confidentiality and dignity of others and not to share another person's personal information, photographs, or medical experiences without permission.

The Foundation may moderate or remove content that violates community guidelines, compromises privacy, or creates safety concerns.

6. Children's Privacy and Family Accounts

The Foundation supports families of children with CdLS and recognizes the importance of protecting children's personal information.

Parent or legal guardian involvement and appropriate authorization are required when personal information is provided on behalf of a child.

Our community platform is intended primarily for adults, including parents, caregivers, professionals, and adults living with CdLS.

Children should not independently create community accounts unless the Foundation expressly permits this through an age-appropriate, consent-based process.

Parents and guardians are encouraged to share only the information reasonably necessary when discussing their child's experiences.

Photographs, medical details, and identifying information about children should be shared thoughtfully and with appropriate permission.

7. Website and Mobile App Hosting

Our website and branded mobile applications are supported by Wix.com and its associated technologies and service providers.

Wix may process and store information required to provide website hosting, member accounts, community functionality, notifications, security, and technical services.

Information may be processed or stored in countries outside the user's country of residence, subject to applicable privacy requirements and relevant service-provider safeguards.

For more information about Wix's privacy practices, please visit:

https://www.wix.com/about/privacy

8. WhatsApp and External Communication Services

The Foundation may offer WhatsApp as an additional channel for direct communication and community support.

When members choose to communicate through WhatsApp, their information may also be processed according to WhatsApp's own privacy terms and practices.

We encourage users not to transmit highly sensitive medical records or identifying information through group conversations.

Participation in WhatsApp communications is voluntary.

Where appropriate, we may recommend a more suitable private communication method for sensitive inquiries.

9. Notifications and Communications

The Foundation may communicate with members through:

Mobile app push notifications
In-app announcements and messages
Email newsletters and service updates
WhatsApp communications
Direct responses to inquiries

Users may manage push notification permissions through their device settings.

Marketing and optional communications will be sent in accordance with applicable consent requirements.

Users may unsubscribe from eligible email communications using the unsubscribe link or by contacting the Foundation.

Certain essential account, privacy, or service-related notices may still be sent where permitted by law.

10. Donations and Payment Information

The Foundation may collect information necessary to process donations, issue charitable tax receipts, and maintain required financial records.

Payments may be processed through third-party payment providers integrated with our website or services.

Payment providers are responsible for handling payment information according to their applicable security and privacy obligations.

The Foundation retains donation and financial records where required by Canadian charitable, accounting, and taxation laws.

11. Sharing of Personal Information

We may share personal information only where reasonably necessary and legally permitted, including with:

Technology and hosting providers supporting our services
Authorized service providers performing functions on our behalf
Payment processors for donation transactions
Healthcare or support professionals where appropriate authorization has been obtained
Regulatory or legal authorities where disclosure is required or permitted by law

We do not sell or rent community member information to commercial data brokers.

We require service providers handling personal information on our behalf to maintain appropriate confidentiality and data protection safeguards.

12. Data Security

We take reasonable administrative, technical, and organizational measures to protect personal information against unauthorized access, misuse, alteration, loss, and disclosure.

These measures may include restricted access to records, account authentication, service-provider security controls, and confidentiality practices.

No internet-based service can guarantee absolute security.

Members are responsible for protecting their account credentials and should promptly notify the Foundation of suspected unauthorized access.

13. Data Retention

We retain personal information only for as long as reasonably necessary to fulfill the purposes for which it was collected, meet applicable legal requirements, resolve disputes, and maintain appropriate organizational records.

Retention periods may differ depending on the nature of the information.

For example, donation and financial records may be subject to statutory retention requirements, while community account information may be eligible for deletion when a member closes their account.

Information no longer required will be securely deleted, anonymized, or otherwise disposed of according to applicable requirements.

14. Access, Correction, and Deletion

Subject to applicable law, individuals may request to:

Access personal information held about them
Correct inaccurate or incomplete information
Withdraw consent where processing depends on consent
Request deletion of eligible personal information
Close their community account
Ask questions about the Foundation's privacy practices

Members may also have access to profile management and account deletion functions within the mobile app.

Requests may be submitted using the Foundation's contact information below.

We may need to verify identity before processing certain requests.

Some information may need to be retained to meet legal, charitable, financial, or other legitimate obligations.

15. International Users

Although the Foundation is based in Canada, our resources and community may be accessed internationally.

Where applicable, we will respect privacy rights arising under relevant laws, including the European Union General Data Protection Regulation (GDPR) and other applicable data protection frameworks.

Individuals may contact the Foundation to ask about the processing of their personal information and the rights available to them in their jurisdiction.

16. Cookies and Analytics

Our website and mobile app may use cookies, analytics technologies, and similar technical tools to maintain functionality, understand general usage patterns, improve performance, and protect security.

Where legally required, users will be provided with appropriate notice and consent options.

Third-party technologies may be subject to their own privacy notices.

17. External Links

Our website and app may provide links to external organizations, healthcare resources, research publications, educational platforms, and other websites.

The Foundation is not responsible for the privacy practices of independently operated third-party websites and services.

Users are encouraged to review their privacy policies before providing personal information.

18. Changes to This Privacy Policy

We may update this Privacy Policy to reflect changes in our services, technology, legal requirements, or privacy practices.

The effective date will be updated when changes are made.

Where appropriate, significant changes will be communicated through our website, mobile app, or other established communication channels.

19. Contact and Privacy Inquiries

For questions, concerns, requests to access or correct personal information, or requests concerning account deletion, please contact:

Canadian CdLS Foundation

Website: https://www.canadiancdlsfoundation.com

Privacy Contact Email: [Insert verified Foundation privacy contact email]

Mailing Address: [Insert Foundation's official Canadian mailing address]

Privacy Officer: [Insert designated privacy contact or title]

We take privacy inquiries seriously and will respond in accordance with applicable legal requirements.