Survey Privacy Notice

Who we are

The Collagen Advocacy Network ("CAN") is a U.S. nonprofit patient advocacy organization. CAN is the controller of the information described here. Contact: privacy@collagenadvocacynetwork.org.

What we collect

A genetic test report, a clinician's letter confirming your gene and EDS type, or a health record entry showing your molecular EDS diagnosis, along with your name and email address and the answers you give on our join form. You may black out anything other than your name, the gene, the variant classification, and your EDS type.

Why, and our legal basis

We use this information only to confirm you are eligible to join CAN's members-only community (our Discord server) and, if you opt in, to take part in CAN surveys and research opportunities limited to people with molecularly confirmed monogenic EDS. Genetic and health data are special category data. Our legal basis is your explicit consent (UK GDPR / EU GDPR Articles 6(1)(a) and 9(2)(a)).

Children

If you apply for a child under 18, you provide their information and consent as their parent or guardian.

Who sees it

Only CAN's data stewards: the CAN officers who review applications and verify eligibility, and the volunteer who maintains our systems. Of these, only the officers who verify eligibility can view your document. We do not share it with anyone else, including our research partners, and we never sell it. Your document is stored by our hosting provider, Cloudflare, under a data processing agreement, only until it is automatically deleted.

International transfer

CAN is based in the United States, so your information will be sent to and processed in the U.S. The U.S. does not have the same data protection laws as the UK or EU, and your information will not have those legal protections while we hold it. By giving explicit consent, you agree to this transfer, knowing this risk, for this purpose only.

How long we keep it

Documents are deleted once reviewed, and automatically within 7 days of upload. We view them only in a secure, access-restricted location and never download or email them. We keep only a record that you were verified, whether you opted into research, and the dates of verification and deletion. We do not record the gene or variant from your document. We keep your join form answers until you ask us to delete them.

Your survey answers

The survey is anonymous. Your answers are never linked to your documents, your name, or your email.

Your rights

You can withdraw consent at any time, and ask to access, correct, or delete your information, by emailing privacy@collagenadvocacynetwork.org. Withdrawing consent does not affect verification already completed.

If you are unhappy with how we handle your data, you can complain to your data protection authority: the Information Commissioner's Office (ico.org.uk) in the UK, or the supervisory authority in your EU country.