This policy explains how A Race Against Blindness ("RAB") handles consumer health data: personal information that identifies, or could reasonably identify, your past, present or future physical or mental health status, including an eye condition or diagnosis, genetic information, treatment, or the fact that you or a family member are seeking care. It applies to residents of Washington, Nevada and every other state, and supplements our Privacy Policy.
1. Consumer health data we collect, and why
| Category | Examples | Purpose |
|---|---|---|
| Condition and diagnosis information you share with us | Telling us that you or your child has Bardet-Biedl syndrome, retinitis pigmentosa or another inherited retinal disease, in a feedback form, a survey, an email, a Help Center ticket, or a grant or program application | To respond to you, to improve our educational content and programs, to plan conferences and community events, and to report on our mission in aggregate |
| Genetic information | A gene or variant you mention (for example, BBS1) | Same as above; we never ask for or store genetic test results unless you send them to us unprompted, in which case we delete them unless you ask us to keep them |
| Family health information | A parent describing a child's condition | Same as above; we treat it as the health data of both the child and the person sharing it |
| Health inferences | None. We do not use your browsing of condition pages, searches, or donations to infer anything about your health, and we do not load advertising or analytics tools on condition, gene or search pages of araceagainstblindness.org | Not collected |
| Precise location, biometric data, or health-related purchases | None | Not collected |
2. Where it comes from
Only from you, when you choose to share it: website forms (including the RP/BBS Community Survey and conference feedback form), email, text message, Help Center tickets, phone calls, event registrations, and grant or program applications. We do not buy health data and do not derive it from other data.
4. Your rights
You have the right to:
- confirm whether we collect, share or sell your consumer health data and receive a copy;
- receive a list of all third parties and affiliates with which we have shared it, with an active email address or other online contact for each;
- withdraw your consent to our collection or sharing;
- have it deleted, including from our backups and from our service providers.
To exercise these rights, email privacy@araceagainstblindness.org, use the form at araceagainstblindness.org/privacy-request, call 855-439-0122, or write to A Race Against Blindness, Attn: Privacy, 3317 S Higley Rd Ste 114-110, Gilbert, AZ 85297. We verify requests using the contact details you gave us and respond within 45 days; if we need up to 45 more days we will tell you why. There is no charge. If we decline a request you may appeal within 60 days by replying to our decision; we will answer in writing within 45 days, and if you remain unsatisfied you may contact the Washington Attorney General (atg.wa.gov), the Nevada Attorney General (ag.nv.gov) or your own state's attorney general.
5. Retention and security
We keep consumer health data only as long as needed for the purpose you shared it for and then delete or de-identify it; survey and feedback responses are de-identified after 24 months. Access is limited to staff who need it. See the Privacy Policy for our security practices.
6. Geofencing
We do not use geofencing around any health care facility.
7. Changes
We will post changes here with a new date and, for material changes, notify people whose health data we hold before the change takes effect.
8. Contact
privacy@araceagainstblindness.org · 855-439-0122 · A Race Against Blindness, Attn: Privacy, 3317 S Higley Rd Ste 114-110, Gilbert, AZ 85297