Consumer Health Data Privacy Policy

Categories of consumer health data we collect

• Genetic information confirming an Ehlers-Danlos Syndrome diagnosis, such as a genetic test report, a clinician's letter naming the gene and EDS type, or a health record entry showing a molecular EDS diagnosis.
• The answers you give on our join form about your health: your EDS type, whether a geneticist confirmed your diagnosis, the date of diagnosis, and whether you are applying as a patient or as the parent or legal guardian of a child with EDS.
• Your name and email address, as they appear with that information.

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

Why we collect it and how we use it

We use this information only to confirm that 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 a molecularly confirmed monogenic EDS type. We do not use it for any other purpose.

Sources of consumer health data

We collect this information only from you, when you choose to provide it through our secure join page.

Categories of consumer health data we share

None. We do not share or sell consumer health data.

Third parties and affiliates we share it with

None. We do not share consumer health data with any third party or affiliate, including research partners. Our service providers act only on our behalf and may not use it for any other purpose: our hosting provider, Cloudflare, stores your join form answers, and stores uploaded documents only until they are automatically deleted; Google delivers the emails we send you.

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 keep your join form answers until you ask us to delete them.

Your rights

You have the right to:

• confirm whether we hold your consumer health data and access it;
• withdraw your consent at any time;
• have your consumer health data deleted.

How to exercise your rights

Email privacy@collagenadvocacynetwork.org with the subject line "Health data request." We will respond as required by law. If we decline your request, you may appeal by replying to our response with the word "Appeal," and we will review it. If your appeal is denied, you may contact the Washington State Attorney General.