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

Our canonical application records are stored in an access-controlled Cloudflare D1 database. A form reports success only after it is durably saved there. Separate restricted Google Sheets provide a familiar operational view for designated Collagen Advocacy Network data stewards; they are not the system that decides whether your submission was accepted. Access is limited to approved stewards and the matching non-administrator automation account for each environment.

After the durable save, identifier-only Cloudflare Queue messages trigger asynchronous Sheet updates and transactional email. The Queue does not contain your form answers. A matching Google Workspace automation account sends messages through the Gmail API, so its Sent mailbox is a documented second location containing the recipient address and message. Normal operations create no R2 exports.

Retention

• Discord intake rows are retained until you explicitly request deletion.
• Confirmed newsletter rows are retained until you unsubscribe or request deletion.
• Unconfirmed newsletter records enter automatic deletion after seven days.
• Correction and deletion use a two-phase verified deletion process so we can confirm the exact record and its external copies before completion.
• A pseudonymous restore journal remains for at least eight and less than nine days, then is automatically removed.
• Cloudflare D1 Time Travel can retain submitted content for up to 30 days after deletion from the live database, depending on the Cloudflare plan. Our recovery tooling permits target restores no older than seven days so the eight-day deletion journal can prevent deleted records from being restored into active use.
• Matching Gmail messages are moved to Trash after identity verification; final removal is bounded by Google's provider retention for Trash.
• Some legacy messages sent before this durable system did not have a deterministic Message-ID. They require a separately verified Workspace-owner review because the automated cleanup will not use a broader recipient, subject, or body search.

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. Requested correction or deletion is a restricted, verified procedure, not an automatic or instant process. We confirm identity through the address already stored, preview the exact canonical record, and obtain a second approval before destructive action. We then remove the matching D1 record, Sheet projection, and transactional-message copies through the two-phase process described above. If identity, scope, or any match is ambiguous, we stop without changing or deleting anything until it is 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.