Privacy Policy

Version 2026-09 · Effective September 28, 2026

The Code Rare Survey Platform is operated by Code Rare, LLC (“we”) so that rare-disease organizations can run surveys and patients, caregivers and professionals can take them. This page explains what we collect, why, who can see it, and how to use your rights. When we change it, you will be asked to agree to the new version the next time you sign in.

What we collect

• Your account — your email address, which is also your sign-in, and your password, stored only as a one-way hash that cannot be turned back into the password.
• Your profile — your name, date of birth, city and state, and whether you are a patient, a medical professional or a guardian. A title, middle name, preferred name, street address and ZIP code are optional.
• Your survey answers — everything you enter while taking a survey.
• Organizations you follow — see “Following” below.
• Your consent — which version of these terms you agreed to, and when.
• Security records — sign-ins, second-factor checks, and each time personal data is viewed, exported or changed, with the account id and network (IP) address involved.

Your browser keeps your sign-in session in its local storage. We use no advertising, analytics or tracking cookies, and the pages load no third-party scripts other than the bot check described below.

How we use it

• To run surveys: saving your answers, letting you stop and resume, and letting you review them.
• To email you sign-in codes, security notices (such as a password change), and a note when a question you answered has been changed so you can update your answer.
• To keep the platform secure: two-step sign-in, bot and abuse protection, and the security records above.
• For aggregate analysis in which you cannot be identified.

We never sell your information, and we never use it for advertising.

Who can see what

• The organization running a survey sees its results: charts and counts, and individual answers listed under an alias such as Participant-K7QM-2X9A. It never sees your name, email address or profile. In what it sees, dates you enter are shown as the year only, uploaded file names are hidden, and written answers are withheld while fewer than five people have answered. Anything you write in a free-text answer is shown as written, so please leave out details that identify you.
• Code Rare administrators manage the platform and see the same aliased results. Security staff can see the security records, which identify accounts by an internal id.
• Following an organization only bookmarks its survey portal on your dashboard. It happens automatically when you register from, sign in through, or take a survey on an organization’s portal. It does not make you a member, the organization cannot see who follows it, and you can stop following at any time.

Service providers

• Email delivery — to send the messages described above.
• Google reCAPTCHA — when enabled, it checks that sign-in, registration and survey starts come from a person. Google receives information about your browser and device for this, under the Google Privacy Policy and Terms of Service.

How long we keep it

• Your account, profile, answers and follows are kept until you delete them (see below).
• An organization can delete a survey’s responses: test responses given while a survey is still a draft are cleared before it goes live, and returning a live survey to draft deletes all of its responses.
• Security records are kept for at least six years.

Your choices and rights

Signed in, your dashboard lets you, at any time:

• See and download everything we hold about you (“Download my data”).
• Correct your profile (“Edit my profile”).
• Withdraw from a survey, deleting your answers to it.
• Stop following an organization.
• Delete all of your survey data — every survey you have taken, your answers, the organizations you follow and your consent records — which also signs you out everywhere.

Your sign-in account and profile are removed by our team: asking from the dashboard notifies us, or you can email us. Residents of California (CCPA) and of the European Economic Area and United Kingdom (GDPR) have these rights by law; we extend them to everyone and will not treat you differently for using them.

Contact

Privacy questions and requests are handled by Rare Strides, Code Rare’s parent company. Email info@rarestrides.com. Sign-in codes and account notices come from survey@coderare.org, which is not monitored — please don’t reply to them. Our security practices are described on the Security & HIPAA page.