​Effective Date: January 1, 2026
 

1. Introduction

Rare360 ("Rare360," "we," "our," or "us") is committed to protecting the privacy and confidentiality of the individuals and organizations we serve. This Privacy Policy explains how we collect, use, disclose, protect, retain, and otherwise process personal information obtained through our website, research activities, communications, and related services.
 

Rare360 specializes in patient-centered market research recruitment and engagement, supporting pharmaceutical companies, biotechnology companies, healthcare organizations, research organizations, and patient advocacy initiatives while prioritizing participant privacy and data protection.

By accessing our website or participating in our services, you acknowledge that you have read this Privacy Policy.
 

2. Scope

This Privacy Policy applies to information collected from:

• Patient research participants

• Caregiver research participants

• Client website visitors

• Individuals who contact Rare360 regarding research opportunities

• Individuals who subscribe to communications from Rare360
   

This Privacy Policy does not apply to information collected directly by our clients or other third parties whose privacy practices are governed by their own privacy notices.
 

3. Information We Collect

Depending on your interaction with Rare360, we may collect:
 

Contact Information

• Name

• Email address

• Telephone number

• Mailing address

• Preferred communication methods

Account Information

Where applicable:

• User account credentials

• Communication preferences

• Participation history

Research Information

Depending upon the study:

• Medical conditions

• Diagnoses

• Treatment history

• Medication experience

• Symptoms

• Healthcare experiences

• Quality of life information

• Research responses

• Survey responses

• Interview responses

• Demographic information

• Caregiver experiences
   

We only collect information reasonably necessary for the specific research purpose.
 

4. How We Use Personal Information

Rare360 uses personal information to:

• Identify eligible participants for research studies

• Contact potential research participants

• Administer research studies

• Coordinate interviews and surveys

• Verify participant eligibility

• Prevent duplicate or fraudulent participation

• Process honoraria

• Respond to participant inquiries

• Improve our services

• Meet contractual obligations

• Comply with applicable laws
   

5. De-identification of Research Data

Protecting participant privacy is a core principle of Rare360.
 

Whenever practicable, Rare360 separates personally identifiable information from research responses.

Prior to providing research results to clients, Rare360 de-identifies or pseudonymizes participant information so that clients receive research findings without direct personal identifiers unless:

• the participant has expressly authorized disclosure;

• disclosure is required by law; or

• disclosure is necessary to fulfill the contractual requirements of a specific research engagement and the participant has been appropriately informed.

6. How We Share Information

Rare360 does not sell personal information.

We may disclose information only as necessary to:

• conduct research studies;

• engage trusted service providers who assist us in operating our business;

• process honoraria;

• comply with legal obligations;

• respond to lawful requests from governmental authorities;

• protect the rights, safety, or security of Rare360, participants, or others.

Research clients generally receive de-identified or aggregated research results unless otherwise disclosed to participants during the informed consent process.

7. Data Security

Rare360 maintains administrative, technical, and organizational safeguards designed to protect personal information against unauthorized access, disclosure, alteration, and destruction.

Safeguards include, where applicable:

• Encryption of data in transit using TLS

• Encryption of stored data

• Secure cloud-based infrastructure

• Role-based access controls

• Strong authentication requirements

• Limited access based upon business need

• Endpoint protection

• Fraud detection and participant verification procedures

• Secure data destruction procedures

• Employee confidentiality obligations

Although no system can guarantee absolute security, Rare360 continually evaluates and improves its security practices.

8. Data Retention

Rare360 retains personal information only for as long as necessary to:

• fulfill the purposes for which it was collected;

• administer research studies;

• comply with contractual obligations;

• satisfy legal or regulatory requirements;

• resolve disputes; and

• enforce agreements.

When personal information is no longer required, Rare360 securely deletes, anonymizes, or otherwise disposes of the information in accordance with its data retention policies.

9. Cookies and Website Technologies

Our website may use cookies and similar technologies to:

• improve website functionality;

• analyze website usage;

• remember user preferences;

• enhance user experience.

Users may modify browser settings to manage cookies, although certain website features may not function properly if cookies are disabled.

10. Your Privacy Rights

Subject to applicable law, individuals may have the right to:

• request access to personal information;

• request correction of inaccurate information;

• request deletion of personal information;

• withdraw consent where processing is based upon consent;

• request restrictions on processing where permitted by law;

• object to certain processing activities; and

• submit complaints regarding our privacy practices.

Rare360 will respond to verified privacy requests in accordance with applicable law.

11. International Data Transfers

Where personal information is transferred across national borders, Rare360 implements appropriate safeguards consistent with applicable privacy laws and contractual requirements.

12. Children's Privacy

Rare360 does not knowingly collect personal information directly from children except where participation is specifically authorized by applicable law, approved by the applicable research protocol, and appropriate parental or legal guardian consent has been obtained.

13. Third-Party Services

Rare360 may utilize trusted third-party service providers for secure cloud hosting, communications, payment processing, scheduling, and other operational services.

These providers are contractually required to maintain appropriate safeguards for personal information and may process information only as authorized by Rare360.

14. Changes to this Privacy Policy

Rare360 may update this Privacy Policy from time to time.

Material changes will be posted on our website with an updated Effective Date.

Continued use of our services following publication of the revised Privacy Policy constitutes acceptance of those changes where permitted by law.

15. Contact Us

If you have questions regarding this Privacy Policy or wish to exercise your privacy rights, please contact:

Rare360 Admin

Email: admin@rare360.life

​

16. Supplemental Notice for U.S. State Privacy Laws

Where applicable, Rare360 complies with relevant U.S. state privacy laws, including those providing rights to access, correct, delete, or obtain information about personal data processing. Rare360 does not sell personal information or share personal information for cross-context behavioral advertising as those terms are defined under applicable law.

17. Commitment to Participant Trust

Rare360 was founded on the principle that participants should maintain confidence in how their personal information is handled. We are committed to ethical recruitment, responsible stewardship of personal information, transparency in our data practices, and protecting participant privacy throughout the research lifecycle.