Step 1 of 5 · Account
1
Account
2
Name
3
About You
4
Location
5
Privacy
Create your account
Step 1 of 5 — Secure login credentials
Your email is your login. Creating an account ensures that survey results
are genuine and prevents duplicate responses. It also lets you take breaks and return to finish a
survey later, participate in multiple surveys, and track your participation history over time.
Security: All data travels over HTTPS / TLS 1.2+ encrypted
connections. Your password is stored using a one-way cryptographic hash — we have no technical
ability to recover it. We never sell, rent, or share your email with third parties.
- At least 8 characters
- At least one number
Creating your account here adds this organization to
Your Organizations on your dashboard so you can find its surveys again. It does
not make you a member of the organization, and you can remove it at any time.
What we collect and how it is protected
Email address — your login credential only. Transmitted over TLS 1.2+.
Never sold, rented, or shared with third parties.
Your name — encrypted with AES-256 before storage.
Invisible to other users and unreadable by data engineers in the database.
Decrypted only by the application to display it back to you.
Never published or shared outside Code Rare.
Your role (Patient / Medical Professional / Guardian) —
used to understand participant perspectives in aggregate. Never linked to your
identity in published results.
Date of birth — used for age-group demographic analysis only.
Never used for identification outside Code Rare.
City & state — geographic analysis of rare disease impact.
If you are the only participant from your city, results are aggregated to the regional level
to protect your privacy. Street address is optional and never shared.
All data in transit — protected by HTTPS / TLS 1.2+ encryption.
All data at rest — stored on access-controlled servers with
field-level AES-256 encryption for sensitive fields and database-level Transparent
Data Encryption (TDE). Systems are operated in alignment with HIPAA security
safeguard principles. You may request deletion of your data at any time.
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Your name
Step 2 of 5 — How we identify you in survey records
Your name personalizes your experience within the portal only.
It is encrypted with AES-256 before it is stored — other users of the software
never see it, and even our data engineers cannot read it in the database. The application
decrypts it solely to display it back to you when you are logged in.
Your name is never published, sold, or shared outside Code Rare.
About you
Step 3 of 5 — Your role and demographics
Why we collect this: Surveys on this platform are designed to capture the perspectives of
patients, caregivers, and medical professionals — these groups often have very different
experiences with rare diseases. Your date of birth helps with age-group analysis.
Neither is used for identification outside Code Rare.
I am participating as: *
Select all that apply — you may be more than one.
Used for age-group demographic analysis only.
Your location
Step 4 of 5 — Geographic context
Why we collect this: Code Rare tracks regional patterns in rare disease impact
across Georgia and the Southeast. City and state are the only required fields —
your street address is never required and never shared.
If you are the only participant from your city, your results will be
aggregated to the regional level so that individual location data is
never published — your geographic privacy is always protected.
Street address (optional)
Privacy & consent
Step 5 of 5 — Finish setting up your account
Your data, your choices. You agreed to how your information is used when you
created your account. From your dashboard you can edit your profile,
download a copy of your data, withdraw your answers from a survey, stop following an
organization, or delete your account — at any time.