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Privacy Policy

RareConnect respects and protects the privacy of people who use the RareConnect website (www.rareconnect.org). Individual control and transparency of one’s personal information are core RareConnect principles.

What information do we collect?

RareConnect only collects unique information about you (such as your e-mail address and birth month and year) when you specifically and knowingly provide such information (for example, at the time of registration). You are encouraged to use a unique username at the time of registration, and not an easily identifiable one (such as your name). By providing personal details you are consenting to its use. Such personal information will be used to identify you as a unique user, and the information will not be shared with any other entity or organization, unless you have specifically requested us to do so or we are required to do so by law.

How your information is used

RareConnect uses data that you share with the platform in several ways, according to the sensitivity of the information and your privacy settings:

  • Statistics: aggregate demographic, health, and usage data may be shared publicly and included in presentations and reports. Examples:
    • Number of users in a particular community;
    • Average number of posts per user;
    • Location information where traffic originates from; and
    • Number of visitors on the site and number of visits.
  • Translations: textual content you share with the site may be sent to a third party translation service over a secured connection (such as Google Translate or Translators without Borders). Examples:
    • Posts;
    • Comments; and,
    • Stories.
  • Research: RareConnect can be used to help you discover research studies that may be of interest to you. None of your information will be used for research without your permission.
    • RareConnect offers a My Studies page where you have the option to complete approved research surveys. When you enter the MyStudies portal you will be shown a research portal Terms of Service and registration form. You will have to complete the registration form before being able to participate in the research studies. You will then have to consent to the terms of the study before being able to participate. The data you enter through MyStudies will be stored on a separate server from your RareConnect profile, to decrease the chances of you being identified in case of a security breach.
  • User experience: We use your preferences in your Account Settings to better your user experience at RareConnect. For example, to tailor your community interaction, we send email notifications based on your preferences.
  • Quality control: RareConnect administrators may monitor site usage and content to improve the platform, fight spam, find bugs, and ensure behaviour adheres to the site’s terms of service. Examples:
    • IP history;
    • Site interactions;
    • Error reports, and,
    • User feedback.

Your Activity

RareConnect uses Google Analytics to anonymously monitor how users move through the site and uses the information to improve user experience.

RareConnect uses a feature, called “local storage.” Local storage is used to keep login sessions alive and record the content contributions of logged-in users: posting, commenting, flagging, editing posts, joining communities, etc. If your computer does not support local storage, cookies will be used instead. Cookies store small amounts of data on your computer about your visit to our site.

Data security

We take data protection seriously. This site has security measures in place to protect the loss, misuse and alteration of the information in our control. Despite the mechanisms in place to keep all information secure and to protect your privacy, there is always a risk of a privacy breach. If a privacy breach occurs, RareConnect will take immediate steps to contain the breach, and contact you as soon as reasonably possible to inform you of the breach, explain what data may have been compromised and suggest steps you might consider taking to secure your personal information.

RareConnect is not responsible for the privacy practices or the content of web sites external to the domain “RareConnect.org”.

Exporting your information

You can export a copy of your posted content from your RareConnect account if you want to back it up or use it outside of RareConnect at any time. This can be done in your Account Settings.

We are committed to data protection

We will continue to review our privacy policy and will notify you of any significant changes. We encourage you to periodically review this policy for the latest information on our privacy practices.

Who can I ask if I have additional questions?

If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you may contact: privacy@rareconnect.org