Privacy Policy

Information We Collect

When you join the Collagen Advocacy Network through our membership form, we collect the following information:

• Name and email address
• Age and country/timezone
• EDS type and whether it has been confirmed by a geneticist
• Whether you are the only family member affected
• Whether you lack access to resources
• Your preferred role (patient, caregiver, medical professional, researcher, or ally)
• Interest in social and advocacy events
• Any accessibility needs you choose to share

How We Use Your Information

We use the information you provide solely for the following purposes:

• To contact you directly with information about the Collagen Advocacy Network
• To provide you with access to our Discord community
• To understand the needs of our community so we can better serve our members

What We Do Not Do

We do not sell, rent, trade, or otherwise share your personal information with any third parties for marketing or commercial purposes. We do not use your information for advertising. We do not share your health-related information with anyone outside the Collagen Advocacy Network without your explicit consent.

Data Storage and Security

Your information is stored securely using industry-standard practices. Access to member data is restricted to authorized administrators of the Collagen Advocacy Network. We take reasonable measures to protect your information from unauthorized access, alteration, or destruction.

Cookies and Analytics

Our website uses Cloudflare Web Analytics, a privacy-first analytics service that does not use cookies or collect personal data. It only tracks aggregate page views and does not identify individual visitors.

Your Rights

You have the right to:

• Request a copy of the personal information we hold about you
• Request correction of any inaccurate information
• Request deletion of your information from our records
• Withdraw from the community at any time

To exercise any of these rights, please contact us at [email protected].

Changes to This Policy

We may update this privacy policy from time to time. Any changes will be posted on this page with an updated effective date. We encourage you to review this policy periodically.

Contact Us

If you have any questions about this privacy policy or how we handle your data, please contact us at [email protected].