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Privacy Policy

NURA Community
Privacy Policy


This Privacy Policy outlines the practices of NURA Community regarding the collection, use, and protection of personal information of users accessing our online social network and digital community platform.

1. Contact details for NURA Community:


2. Information we collect and purpose:

  • Usernames (which may be legal names, but don’t have to be and often are not) and email addresses

Users (community members) may voluntarily share the following types of information when participating in community discussions and interacting with other members:

  • ​Health information, including but not limited to:

    • Diagnosis details

    • Medication information

    • Health status updates

  • Additional demographic information, such as:

    • Age

    • Marital status

    • Geographic location (city, country etc)

This information enables users to connect with others, share experiences, and access relevant resources and support.

3. Lawful bases for processing:

Our lawful bases for collecting and using personal information are:

  • Consent: Users provide consent when signing up for the platform.

  • Legitimate interest: NURA Community serves as a platform for people affected by Long COVID, ME/CFS, and related conditions, to connect with and support each other. The sharing of health information is inherent to the purpose of the community.


4. Source of personal information:

We obtain personal information directly from users upon registration and through their voluntary interactions within the platform.

5. Retention Schedule:

Our retention schedule for personal information is as follows:

  • Names and contact details: Retained for as long as the user maintains an active account. Deleted upon account closure.

  • Health information: Retained for as long as the user maintains an active account. Deleted upon account closure, unless otherwise required for legal or regulatory purposes.

6. Disclosure of information:

We do not share or sell users' personal information to third parties, except in rare, emergency cases where it may be necessary to protect the vital interests of users or others.

7. Data Protection Rights:

Users have the following rights under data protection law:

  • Right of access

  • Right to rectification

  • Right to erasure

  • Right to restriction of processing

  • Right to object to processing

  • Right to data portability

  • Right to withdraw consent

To exercise these rights, make a data protection request or make a complaint, users can contact us using the provided contact details.

8. Complaints:

If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the Information Commissioner's Office (ICO).

The ICO’s address:  

Information Commissioner’s Office
Wycliffe House
Water Lane

Helpline number: 0303 123 1113



9. Last updated:

This Privacy Policy was last updated on 21st April 2024.

For any inquiries regarding this Privacy Policy, please contact us at the provided email address:

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