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, whether you are a patient or the parent or legal guardian of a child with EDS, event interests, accessibility needs you choose to share, your consent, and whether you want to hear about research
• Genetic report: the report you upload to confirm eligibility, kept for at most 7 days (see below)
• Newsletter: email address only
• Form protection: an automated check processes technical information about your browser to protect our forms from abuse

How We Use Your Information

Health information from the join form is also covered by our Consumer Health Data Privacy Policy and, for verification and surveys, our Survey Privacy Notice.

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

• To review Discord community requests, confirm eligibility from the genetic report, and contact approved applicants separately with an invitation
• If you opt in, to tell you about CAN surveys and research opportunities
• 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.

Who Processes Your Information

We use two service providers, who process your information only on our behalf: Cloudflare, which hosts this website and stores your information, and Google, which delivers the emails we send you. Your information is stored and processed in the United States.

How We Protect It

Your information is kept in access-controlled systems. Only CAN's data stewards can sign in to review it, and every view and change they make is logged. Genetic reports go straight to private storage, can be opened only by the officers who verify eligibility, and are never emailed or downloaded.

How Long We Keep It

• Join form answers: until you ask us to delete them.
• Genetic reports: deleted as soon as they have been reviewed, and always within 7 days of upload.
• Newsletter subscriptions: until you unsubscribe or ask us to delete them. Unconfirmed newsletter sign-ups are removed after seven days.
• Copies of the emails we send you: deleted automatically within 30 days of sending.
• After deletion, information can remain in our hosting provider's backups for up to 30 days before it is permanently removed.

Cookies and Analytics

Our website uses Cloudflare Web Analytics, a privacy-first analytics service that does not use cookies or collect personal or health 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 privacy@collagenadvocacynetwork.org. Before acting on a request, we confirm it came from the email address we hold. We correct the answers you ask us to fix. If you ask us to delete your information, we remove it from our records, including any genetic report. Our copies of the emails we sent you are deleted automatically within 30 days of sending. If you only want to stop the newsletter, we remove just that subscription. If it is unclear who is asking or which records a request covers, we change nothing 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.