Privacy Policy

Information We Collect

We collect different information for our Discord community and newsletter:

• Discord intake: name, email, age if provided, country/timezone, rare EDS diagnosis details, patient or family role, event interests, and accessibility needs you choose to share
• Newsletter: email address only
• Security: Cloudflare Turnstile processes technical request information to protect the forms from abuse

How We Use Your Information

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

• To review Discord community requests and contact approved applicants separately with an invitation
• To understand the needs and accessibility preferences of our patient and family community
• To send newsletter confirmation messages and, after confirmation, Collagen Advocacy Network updates

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

Discord intake and newsletter data are stored in separate restricted Google Sheets. Access is limited to designated Collagen Advocacy Network data stewards and the matching non-administrator automation account for each environment. Our Cloudflare Worker validates each request and places accepted form events on a Cloudflare Queue before Google processing. Queue messages are temporary; failed messages can enter a bounded dead-letter queue while an operator reviews or retries them.

Transactional acknowledgments and newsletter confirmations are sent through the Gmail API from our Google Workspace. The matching automation account's Sent mailbox is therefore a documented second location containing the recipient address and message. The production system has no custom admin database after the approved release and deletion of the legacy Cloudflare D1 storage.

Retention

• Discord intake rows are retained until you explicitly request deletion.
• Confirmed newsletter rows are retained until you unsubscribe or request deletion.
• Unconfirmed newsletter rows are removed after seven days.
• Temporary Queue and dead-letter-queue messages follow the bounded Cloudflare retention configured for the service.

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
• Unsubscribe from newsletter messages
• Withdraw from the community at any time

To exercise any of these rights, contact us at info@collagenadvocacynetwork.org. Deletion is a restricted manual procedure, not an automatic or instant process. After we verify the requester and exact scope, we permanently delete only matching verified Google Sheet rows and matching confirmation or acknowledgment messages from the applicable automation Sent mailbox. If a match is ambiguous, we stop without deleting anything until it can be resolved.

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 info@collagenadvocacynetwork.org.