Last updated: May 7, 2026
1. Who We Are
PVNH Support & Awareness is an international organization dedicated to support, awareness, advocacy, education, fundraising, and research initiatives for individuals and families affected by Periventricular Nodular Heterotopia (PVNH), Gray Matter Heterotopia (GMH), Subcortical Band Heterotopia (SBH), and related neuronal migration disorders.
Our website provides educational resources, awareness initiatives, advocacy information, support opportunities, event information, research participation opportunities, and ways to connect with our community.
2. Our Commitment to Privacy
PVNH Support & Awareness is committed to protecting personal information and handling data responsibly in accordance with applicable privacy laws, including Canadian privacy legislation, GDPR where applicable, and relevant U.S. privacy requirements.
We recognize that some individuals and families within our community may voluntarily share sensitive medical, genetic, or lived experience information. We strive to handle such information respectfully, responsibly, and confidentially.
3. Information We Collect
We may collect personal information voluntarily provided by users, including:
- Name
- Email address
- Mailing address
- Country or region
- Phone number
- Donation information
- Event registration details
- Newsletter subscription preferences
- Messages submitted through forms
- Information voluntarily shared regarding medical journeys, diagnoses, family history, or lived experience
- Research or registry participation information where applicable
We may also automatically collect limited technical information such as:
- IP address
- Browser type
- Device information
- Website usage analytics
- Cookies and tracking technologies
4. Health, Registry, and Research Information
Some individuals may voluntarily share personal, medical, genetic, or lived experience information through:
- Contact forms
- Surveys
- Awareness campaigns
- Community participation
- Support requests
- Registry participation
- Research initiatives
- Story submissions
- Educational or advocacy activities
Providing this information is always voluntary.
PVNH Support & Awareness may collect, store, and use information submitted as part of approved support, advocacy, registry, research, educational, fundraising, or community initiatives in accordance with applicable privacy laws and internal confidentiality practices.
We take reasonable administrative and technical measures to protect sensitive information and limit access to authorized individuals involved in operational, advocacy, support, educational, research, or administrative activities.
Participation in registries, surveys, research initiatives, or support programs may be subject to additional consent forms, privacy notices, or participation agreements where applicable.
PVNH Support & Awareness is not a healthcare provider and does not provide medical diagnosis, treatment, or emergency medical services.
5. How We Use Information
We may use collected information to:
- Respond to inquiries
- Provide support resources
- Share newsletters and updates
- Organize awareness campaigns and events
- Process donations
- Improve website functionality and user experience
- Understand community needs
- Support advocacy, education, fundraising, and research initiatives
- Maintain internal records
- Protect website security and integrity
- Comply with legal obligations
We do not sell or rent personal information to third parties.
We may share limited information with trusted service providers or collaborators where necessary to support approved operational, payment-processing, research, advocacy, educational, or community activities, and only where appropriate safeguards are in place.
6. Legal Basis for Processing Information
Where required by applicable law, we rely on one or more of the following legal bases for processing personal information:
- Consent
- Legitimate organizational interests
- Legal or regulatory compliance obligations
- Contractual necessity
- Protection of vital interests
- Research, advocacy, educational, or public interest activities where permitted by law
Individuals may withdraw consent where applicable, subject to legal or operational limitations.
7. Cookies and Analytics
Our website may use cookies and similar technologies to:
- Improve user experience
- Analyze website traffic
- Understand visitor behavior
- Support website functionality and security
Third-party tools or services such as analytics providers, social media platforms, embedded media services, donation processors, or email communication platforms may collect limited information according to their own privacy policies.
Users may manage or disable cookies through their browser settings.
8. Email Communications
If you subscribe to our newsletter, event updates, awareness campaigns, or communications, we may send:
- Educational resources
- Awareness campaign information
- Event announcements
- Community updates
- Advocacy information
- Fundraising or donation campaigns
- Research or participation opportunities
You may unsubscribe from communications at any time using the unsubscribe link included in emails or by contacting us directly.
9. Donations and Payments
Donations or payments made through the website may be processed through third-party payment providers.
PVNH Support & Awareness does not store full payment card information on its servers.
Third-party payment providers maintain their own privacy and security policies.
10. User Stories, Testimonials, and Media
By voluntarily submitting stories, testimonials, photographs, videos, comments, awareness materials, or related content to PVNH Support & Awareness, individuals confirm they have the right to share such materials and grant permission for their potential use in awareness, educational, advocacy, fundraising, research, community, or promotional activities unless otherwise agreed in writing.
Requests to remove previously shared content may be considered where reasonably possible.
11. Data Transfers and International Users
PVNH Support & Awareness supports individuals and families worldwide.
By using this website or participating in our initiatives, users understand that information may be processed or stored in countries outside their country of residence, including Canada.
Where appropriate, we take reasonable measures to help protect information transferred across jurisdictions.
12. Data Security
We take reasonable administrative, organizational, and technical measures to safeguard personal information against unauthorized access, disclosure, misuse, alteration, or loss.
While we take reasonable measures to protect information, no method of electronic transmission or storage can be guaranteed to be fully secure.
13. Children’s Privacy
This website is intended for general audiences.
Parents or legal guardians should supervise minors using the website or participating in online activities.
Where required by applicable law, parental or guardian involvement may be required before collecting certain personal information relating to minors.
14. Your Rights
Depending on your jurisdiction and applicable privacy laws, you may have rights to:
- Access your personal information
- Correct inaccurate information
- Withdraw consent
- Request deletion of information
- Request restriction of processing
- Object to certain processing activities
- Request information about how personal data is used
To exercise privacy-related rights or make a request, contact us at:
Email: info@pvnhsupport.com
We will respond within a reasonable timeframe and in accordance with applicable legal requirements.
15. Breach Notification
In the event of a privacy or security breach involving personal information, PVNH Support & Awareness will take reasonable steps to investigate the incident and provide notifications where required by applicable law.
16. Third-Party Links
Our website may contain links to external websites, organizations, social media platforms, research institutions, or partner organizations.
PVNH Support & Awareness is not responsible for the privacy practices, content, or security of third-party websites or services.
17. Governing Law
This Privacy Policy shall be governed by the applicable laws of the Province of British Columbia and the federal laws of Canada applicable therein.
18. Changes to This Privacy Policy
We may update this Privacy Policy periodically.
Updated versions will be posted on this page with a revised effective date.
Continued use of the website after changes are posted constitutes acceptance of those updates.
19. Contact Us
PVNH Support & Awareness
Vancouver, British Columbia, Canada
Website: pvnhsupport.com
Email: info@pvnhsupport.com
PVNH Support & Awareness is an international organization dedicated to support, awareness, advocacy, education, fundraising, and research initiatives for individuals and families affected by Periventricular Nodular Heterotopia (PVNH), Gray Matter Heterotopia (GMH), Subcortical Band Heterotopia (SBH), and related neuronal migration disorders.
Our website provides educational resources, awareness initiatives, advocacy information, support opportunities, event information, research participation opportunities, and ways to connect with our community.
2. Our Commitment to Privacy
PVNH Support & Awareness is committed to protecting personal information and handling data responsibly in accordance with applicable privacy laws, including Canadian privacy legislation, GDPR where applicable, and relevant U.S. privacy requirements.
We recognize that some individuals and families within our community may voluntarily share sensitive medical, genetic, or lived experience information. We strive to handle such information respectfully, responsibly, and confidentially.
3. Information We Collect
We may collect personal information voluntarily provided by users, including:
- Name
- Email address
- Mailing address
- Country or region
- Phone number
- Donation information
- Event registration details
- Newsletter subscription preferences
- Messages submitted through forms
- Information voluntarily shared regarding medical journeys, diagnoses, family history, or lived experience
- Research or registry participation information where applicable
We may also automatically collect limited technical information such as:
- IP address
- Browser type
- Device information
- Website usage analytics
- Cookies and tracking technologies
4. Health, Registry, and Research Information
Some individuals may voluntarily share personal, medical, genetic, or lived experience information through:
- Contact forms
- Surveys
- Awareness campaigns
- Community participation
- Support requests
- Registry participation
- Research initiatives
- Story submissions
- Educational or advocacy activities
Providing this information is always voluntary.
PVNH Support & Awareness may collect, store, and use information submitted as part of approved support, advocacy, registry, research, educational, fundraising, or community initiatives in accordance with applicable privacy laws and internal confidentiality practices.
We take reasonable administrative and technical measures to protect sensitive information and limit access to authorized individuals involved in operational, advocacy, support, educational, research, or administrative activities.
Participation in registries, surveys, research initiatives, or support programs may be subject to additional consent forms, privacy notices, or participation agreements where applicable.
PVNH Support & Awareness is not a healthcare provider and does not provide medical diagnosis, treatment, or emergency medical services.
5. How We Use Information
We may use collected information to:
- Respond to inquiries
- Provide support resources
- Share newsletters and updates
- Organize awareness campaigns and events
- Process donations
- Improve website functionality and user experience
- Understand community needs
- Support advocacy, education, fundraising, and research initiatives
- Maintain internal records
- Protect website security and integrity
- Comply with legal obligations
We do not sell or rent personal information to third parties.
We may share limited information with trusted service providers or collaborators where necessary to support approved operational, payment-processing, research, advocacy, educational, or community activities, and only where appropriate safeguards are in place.
6. Legal Basis for Processing Information
Where required by applicable law, we rely on one or more of the following legal bases for processing personal information:
- Consent
- Legitimate organizational interests
- Legal or regulatory compliance obligations
- Contractual necessity
- Protection of vital interests
- Research, advocacy, educational, or public interest activities where permitted by law
Individuals may withdraw consent where applicable, subject to legal or operational limitations.
7. Cookies and Analytics
Our website may use cookies and similar technologies to:
- Improve user experience
- Analyze website traffic
- Understand visitor behavior
- Support website functionality and security
Third-party tools or services such as analytics providers, social media platforms, embedded media services, donation processors, or email communication platforms may collect limited information according to their own privacy policies.
Users may manage or disable cookies through their browser settings.
8. Email Communications
If you subscribe to our newsletter, event updates, awareness campaigns, or communications, we may send:
- Educational resources
- Awareness campaign information
- Event announcements
- Community updates
- Advocacy information
- Fundraising or donation campaigns
- Research or participation opportunities
You may unsubscribe from communications at any time using the unsubscribe link included in emails or by contacting us directly.
9. Donations and Payments
Donations or payments made through the website may be processed through third-party payment providers.
PVNH Support & Awareness does not store full payment card information on its servers.
Third-party payment providers maintain their own privacy and security policies.
10. User Stories, Testimonials, and Media
By voluntarily submitting stories, testimonials, photographs, videos, comments, awareness materials, or related content to PVNH Support & Awareness, individuals confirm they have the right to share such materials and grant permission for their potential use in awareness, educational, advocacy, fundraising, research, community, or promotional activities unless otherwise agreed in writing.
Requests to remove previously shared content may be considered where reasonably possible.
11. Data Transfers and International Users
PVNH Support & Awareness supports individuals and families worldwide.
By using this website or participating in our initiatives, users understand that information may be processed or stored in countries outside their country of residence, including Canada.
Where appropriate, we take reasonable measures to help protect information transferred across jurisdictions.
12. Data Security
We take reasonable administrative, organizational, and technical measures to safeguard personal information against unauthorized access, disclosure, misuse, alteration, or loss.
While we take reasonable measures to protect information, no method of electronic transmission or storage can be guaranteed to be fully secure.
13. Children’s Privacy
This website is intended for general audiences.
Parents or legal guardians should supervise minors using the website or participating in online activities.
Where required by applicable law, parental or guardian involvement may be required before collecting certain personal information relating to minors.
14. Your Rights
Depending on your jurisdiction and applicable privacy laws, you may have rights to:
- Access your personal information
- Correct inaccurate information
- Withdraw consent
- Request deletion of information
- Request restriction of processing
- Object to certain processing activities
- Request information about how personal data is used
To exercise privacy-related rights or make a request, contact us at:
Email: info@pvnhsupport.com
We will respond within a reasonable timeframe and in accordance with applicable legal requirements.
15. Breach Notification
In the event of a privacy or security breach involving personal information, PVNH Support & Awareness will take reasonable steps to investigate the incident and provide notifications where required by applicable law.
16. Third-Party Links
Our website may contain links to external websites, organizations, social media platforms, research institutions, or partner organizations.
PVNH Support & Awareness is not responsible for the privacy practices, content, or security of third-party websites or services.
17. Governing Law
This Privacy Policy shall be governed by the applicable laws of the Province of British Columbia and the federal laws of Canada applicable therein.
18. Changes to This Privacy Policy
We may update this Privacy Policy periodically.
Updated versions will be posted on this page with a revised effective date.
Continued use of the website after changes are posted constitutes acceptance of those updates.
19. Contact Us
PVNH Support & Awareness
Vancouver, British Columbia, Canada
Website: pvnhsupport.com
Email: info@pvnhsupport.com
1. Data Controller Information
PVNH SUpport & Awareness
206-1082 West 8th ave.,Vancouver, BC Canada V6H 1C4
info@PVNHsupport.com
604.714.1222
2. What Personal Data We Collect
We may collect and process the following personal data:
- Identity Data: Name, date of birth, and gender
- Contact Data: Email address, phone number, and mailing address
- Financial Data: Payment details (if applicable)
- Technical Data: IP address, browser type, and device information
- Usage Data: Information on how you use our website and services
- Marketing & Communication Data: Preferences for receiving communications from us
3. How We Collect Your Data
We collect data in the following ways:
- Direct interactions: When you fill out forms, subscribe to our services, or contact us
- Automated technologies: Through cookies, server logs, and similar technologies
- Third-party sources: When permitted by law, we may receive data from external sources
4. Purpose of Processing Your Data
We process your personal data for the following reasons:
- To provide and manage our services
- To process transactions and manage payments
- To improve our website, products, and customer experience
- To communicate with you regarding updates, research, events (with your consent)
- To comply with legal obligations
5. Legal Basis for Processing (GDPR & PIPEDA)
We rely on one or more of the following legal bases to process your data:
- Consent: When you provide explicit consent
- Contractual Obligation: When processing is necessary for contract fulfillment
- Legal Compliance: To meet legal or regulatory obligations
- Legitimate Interests: When processing is necessary for our business interests, provided it does not override your rights
- PIPEDA Compliance: Ensuring meaningful consent and the ability to withdraw consent at any time
6. Your Rights Under GDPR, PIPEDA, and U.S. Privacy Laws
Depending on your location, you have the following rights regarding your personal data:
- Right to Access: Request a copy of your data
- Right to Rectification: Request corrections to inaccurate data
- Right to Erasure (GDPR/PIPEDA): Request deletion of your data
- Right to Restriction of Processing: Request limited use of your data
- Right to Data Portability: Request transfer of your data to another entity
- Right to Object: Object to data processing in certain circumstances
- Right to Withdraw Consent: Withdraw consent at any time
- CCPA/CPRA Rights (California Residents):
- Right to Know: Request information about data collection and usage
- Right to Delete: Request deletion of personal information
- Right to Opt-Out: Prevent the sale or sharing of personal data
- Right to Non-Discrimination: Exercise your rights without penalty
To exercise any of these rights, contact us at info@PVNHSupport.com. We will respond within the legally required timeframe.
7. Data Transfers and Cross-Border Compliance
If we transfer your data outside the European Economic Area (EEA), Canada, or the U.S., we ensure adequate safeguards are in place to protect your data in accordance with applicable privacy laws.
8. Breach Notification Policy
- GDPR: We will notify regulatory authorities and affected individuals if a data breach poses a risk to rights and freedoms.
- PIPEDA: We will notify the Office of the Privacy Commissioner of Canada (OPC) and individuals if a breach poses a real risk of significant harm.
- CCPA/CPRA & U.S. Laws: We will notify affected consumers and relevant state authorities if required by law.
9. Children’s Privacy (COPPA Compliance – U.S.)
We comply with the Children’s Online Privacy Protection Act (COPPA) and obtain verifiable parental consent before collecting personal data.
10. Cookies and Tracking Technologies
Our website uses cookies and similar technologies to improve user experience and analyze site traffic. You can manage cookie settings in your browser. California residents have the right to opt out of tracking for targeted advertising purposes.
11. Changes to This Privacy Policy
We may update this Privacy Policy periodically. Any changes will be posted on this page with an updated effective date.
12. Contact Information
If you have any questions or concerns about this Privacy Policy, please contact us at:
PVNH SUpport & Awareness
206-1082 West 8th ave.,Vancouver, BC Canada V6H 1C4
info@PVNHsupport.com
604.714.1222
By using our website and services, you acknowledge that you have read and understood this Privacy Policy.
