Privacy Policy


RARE-X respects your privacy and is committed to protecting it through compliance with this Privacy Policy. This Policy describes the types of information we may collect from you or that you may provide when you visit our general Site or participate in our programs, and our practices for collecting, using, maintaining, protecting and disclosing that information. We also describe the measures we take to protect the security of the information and how to contact us about our privacy practices.

Please review this Privacy Policy carefully to understand how we collect information, how we use the information, with whom we share it, and the choices available regarding our use of the information. If you do not agree with our policies and practices, you may choose not to use our Site. By accessing and using the general Site, our resources or by participating in our programs, you accept and agree to this Privacy Policy.

Information We Collect

  • We collect information when you register on our general Site, and when you choose to provide information through this Site. The types of information we may collect include:
  • Contact information (name, postal address, email address, and phone number)
  • Username and password
  • Disease(s) of interest
  • Your role in rare disease
  • Professional information (such as a medical license number)
  • Content you may provide through our message boards and forums (such as event details and photos)

In addition, when you visit our general Site, we may collect certain information by automated means, such as cookies and web beacons. The information we obtain in this manner includes: IP address, browser characteristics, device characteristics, operating system, referring URLs, geographic location, information on actions taken on our Site, and dates and times of website visits. A “cookie” is a text file that websites send to a visitor’s computer or other Internet-connected device to uniquely identify the visitor’s browser or to store information or settings in the browser. A “web beacon,” also known as an Internet tag, pixel tag or clear GIF, links web pages to web servers and their cookies and may be used to transmit information collected through cookies back to a web server. Through these automated collection methods, we obtain “clickstream data,” which is a log of content on which a visitor clicks while browsing a website. As the visitor clicks through the website, a record of the action may be collected and stored. Your browser may tell you how to be notified when you receive certain types of cookies or how to restrict or disable certain types of cookies. Please note, however, that without cookies you may not be able to use all of the features of our website.

How We Use the Information

We Collect

RARE-X may use the information we collect to:

  • offer and provide information and services to you
  • display content on our Site
  • personalize your Site experience and deliver the type of content in which you are most interested
  • communicate with you about, and administer your participation in, surveys, events, programs, webinars, newsletters, promotions and other general Site features
  • respond to and communicate with you about your inquiries and requests and provide information you request send periodic emails regarding our programs and resources
  • operate, evaluate and improve our business (including developing new products and services; enhancing and improving our services; managing our communications; analyzing our products; performing data analytics; and performing accounting, auditing, billing reconciliation and collection activities and other internal functions)
  • perform data analyses and processing (including market and consumer research, trend analysis, financial analysis, anonymization, encryption and tokenization of personal information)
  • protect against, identify and prevent fraud and other criminal activity, claims and other liabilities; and
  • comply with and enforce applicable legal requirements, relevant industry standards and our policies.

Your Choices

Your use of our general Site and resources is voluntary. We offer you certain choices about how your information is collected, used, and shared, from deleting or correcting information you include in your profile and controlling the visibility of your posts to advertising opt-outs and communication controls. You can control the visibility of your account profile. You can review and change your preferences by logging into your account.

You can unsubscribe from our emails at any time by following the instructions contained within the email.

We retain your personal information even after you have closed your account if reasonably necessary to comply with our legal obligations (including law enforcement requests), meet regulatory requirements, resolve disputes, maintain security, prevent fraud and abuse, or fulfill your request to “unsubscribe” from further messages from us.

Links to Other Websites

Our Site may provide links to other websites for your convenience and information. These websites may operate independently from us. Linked websites may have their own privacy policies, which we strongly suggest you review if you visit any linked websites. To the extent any linked websites you visit are not owned or controlled by us, we are not responsible for those websites’ content, any use of those websites, or the privacy practices of those websites.

How We Protect Your Information

RARE-X takes reasonable and appropriate measures to protect your information from accidental, unlawful or unauthorized destruction, loss, alteration, access, disclosure or use. RARE-X implements certain physical, administrative, and technical safeguards that are designed to protect the integrity and security of your information. RARE-X personnel may access and use information only if they are authorized to do so and only for the purpose for which they are authorized.

Unfortunately, the transmission of information via the internet is not completely secure. Although we do our best to protect your information, we cannot guarantee that information may not be accessed, disclosed, altered, or destroyed by a breach of any of our physical, technical, or administrative safeguards. Any transmission of information is at your own risk. You agree that RARE-X is not liable for the unauthorized release of your information, unless such release was the result of gross negligence or willful misconduct on the part of RARE-X.

Children’s Online Privacy Protection Act (COPPA)

When it comes to the collection of information from children under the age of 13 years old, the Children’s Online Privacy Protection Act (COPPA) puts parents in control. The United States Federal Trade Commission enforces COPPA, which spells out what operators of websites and online services must do to protect children’s privacy and safety online. We comply with all applicable COPPA requirements and do not specifically market our Services to children under the age of 13 years old.

Changes To Our Privacy Policy

At our sole discretion, we may make changes to this Privacy Policy at any time. When changes are made, we will post an updated Privacy Policy on our Site. The changes will apply to all information we have about you. All changes are effective immediately upon posting; the date the Privacy Policy was last revised is identified at the top of the page. If you access and use our Site or Resources after the date on which the Privacy Policy has changed, RARE-X will treat your use as acceptance of the updated Privacy Notice. You are expected to check this page from time to time so you are aware of any changes, as they are binding on you.

Questions and Comments

RARE-X commits to resolve questions and comments about your privacy and our collection and use of your information. Individuals with inquiries or comments can email us at

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