Privacy Statement


Thank you for visiting this website, which is owned and operated by Carenity®, a healthcare company headquartered in Paris, France. This Privacy Statement, which is intended for U.S. visitors to our website, explains our online practices relating to information that you choose to provide through this website, as well as the choices you can make about the way your personal information is collected and used. If you are a resident of a country other than the U.S., please click on the appropriate region’s website privacy statement.

By using this website, you agree to the terms of this Privacy Statement and our Terms of Use.

Who we are

Since 2011, Carenity’s motto has been ‘the Patient comes first”. We have created this free social media website to help connect patients around the world who suffer from the same medical conditions, so that they can feel less alone and find comfort and useful information provided by other patients and medical professionals. This in turn, may hopefully help improve your everyday life.

Site Hosting is hosted by Amazon Web Services, based in Frankfurt, 60323 - Germany.

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Personal Information We Collect

You may browse many sections of our website, such as our newsfeeds, without providing any personal information about yourself. However, if you choose to join one or more of our discussion forums, health communities, or private messaging options, or if you choose to sign up for a newsletter, apply for employment, or use our Contact Us option, we will necessarily be required to collect certain personal information from you. "Personal information" means information that can be directly or indirectly linked to a specific person. It includes, for example, your name, your email address and email username, your Carenity sign-in information, your address, and any medical or health information that you choose to share, including for example, your medical condition, age, medications, etc.

The information we collect will be related to the communication service or information requested, and may include, for example, your name, address, telephone number, email address, age, health condition, or feedback that you would like to provide to other patients or healthcare professionals about your health condition. If you choose to participate in one of our health communities and share information about your health condition and experiences, you will, by the very nature of the information you provide, be including sensitive health information about yourself.

If you browse our site, we may also collect ‘cookies’ (as described below). However, we do not ask for or track any location based information from your devices.


We may display personal testimonials of satisfied customers on our site in addition to other endorsements. With your express consent, we may post your testimonial along with your name. If you wish to update or deactivate your testimonial, you can contact us at

Use and Sharing of Your Information

We may use the information that you provide to us for the following purposes:

  • - To enroll you in the requested health communities that you select
  • - To provide site content and other information you request (such as a newsletter)
  • - To contact you regarding your use of our website
  • - To send you news and information we believe will be of interest to you (in accordance with any privacy preferences you have expressed to us)
  • - To invite you to participate in surveys and provide feedback to us (in accordance with any privacy preferences you have expressed to us)
  • - To better understand your needs and interests
  • - To improve the content, functionality and usability of the Service
  • - To provide you with a personalized experience when you use the Service, and
  • - For site security, fraud prevention or other legal purposes, including other purposes described in this Privacy Statement.

Information that you choose to post on open forums on our site will be available to others who enroll in our website programs, and, depending upon whether the forum is open to enrollees or all site visitors, may be visible to anyone who visits our site.

Carenity does not share or sell any personal information that you provide to us through our website for separate use by any third party. We may share your personal information with our subsidiaries, joint ventures, affiliates, service providers, and authorized distributors to the extent that they are assisting Carenity in fulfilling your request for information, products, services, or assistance. If we do so, the recipients are required to safeguard your information in a manner consistent with the protections that Carenity has put in place to protect your information. We limit access to your private contact information to staff members assisting with the site and those whose job responsibilities relate to collection and safeguarding of our user data.

From time to time, we will also provide aggregate statistics about our customers, sales, online traffic patterns and related information to reputable third parties who help us improve our business and services, including improving our offerings to patients. These statistics do not include any personally identifying information.

We may also be required to share certain personal information for legal reasons, such as in response to regulatory inspections that the government conducts to ensure compliance, or in response to a subpoena or other legal order. If so, we limit the information to that which is required. Please note that for the most part, government agencies are also required to adhere to privacy and security standards for any data that they receive.

If we sell, assign or transfer all or part of the Carenity business, we may transfer your personal information to the buyer. However, the buyer, assignee, or transferee will be required to safeguard your personal information in a manner that is consistent with the requirements in this Privacy Policy.

With your permission, we may also share your information with third party research sponsors who are engaged in medical research studies relating to your health condition, so that you can connect with them in relation to new studies or treatments that may become available for your condition.

Cookies and Other Anonymous Web Tracking Techniques

Like most websites, we use "cookies" on our website to help us serve you better on future visits, and to help us evaluate and improve the content or functions of our site. A cookie is a small text file which is sent by a website, accepted by a web browser and then placed on your hard drive. The information collected from these cookies lets us know that you visited our site in the past, and helps you avoid having to re-enter information on each visit in order to use some of our services. You can always set your browser to refuse all cookies from this and other websites that you may visit. This will provide you with more control over the acceptance of cookies on your hard drive. However, it is possible that some portions of this website will not function properly or may perform more slowly if you choose to reject cookies.

We also collect information that is sent to us automatically by your web browser. This information typically includes your IP address, the date and time of your visit, and the pages you visit. (Your IP address is a unique number that is automatically assigned to your computer when you connect to the Internet. It is used to identify your computer's "location" in cyberspace, so that the information you request can be delivered to you.) IP addresses do not include your name, email address or other information that identifies you personally, but in some cases, they can be used to identify you. For example, we may link your IP address to account information that identifies you personally. Please check your browser if you want to learn what information your browser sends or how to change your settings. Generally, we do not link the information provided by your browser to information that identifies you by name.

We may also use third-party vendors, such as Google Ad Words, Bing Ads and/or Yahoo Gemini, to promote our Services online. These ad network partners may display our promotions or information regarding our Services.

Safeguarding Your Information

Your information may be collected, processed and/or stored in the United States, France, or other countries outside of your country of residence. Regardless of the location and consistent with applicable laws and requirements, Carenity has put in place appropriate physical, electronic, and administrative safeguards to protect your personal information from loss, misuse, alteration, theft, unauthorized access, or unauthorized disclosure. We evaluate these safeguards on an ongoing basis to help minimize risks from new security threats as they become known. Unfortunately, no website, server or database is 100% secure. Therefore, we cannot guarantee its absolute security. If information that you post on a community or other shared service through our site is made available to other site users, we cannot safeguard or protect that information. For this reason, you should use care and discretion when you post content on the site, and use caution when making connections with others through our messenger service.

Our Commitment to Children's Privacy

This website is not intended for use by children under 13 years of age. If we learn that we have directly collected information from anyone under the age of 13, we will purge that information immediately, except to the extent that it is needed for responding to a question or inquiry on a one-time basis from the child or his or her parent or guardian.

At the same time, we are mindful of the many health conditions affecting children, and welcome the parents or guardians of children under the age of 13 to enroll on our site to receive useful information for their children and family members.

Right to Update or Access Your Information

Carenity takes reasonable steps to ensure that your personal data is accurate and up-to-date for the purposes for which it was collected. We encourage you to contact us to update or correct your enrollment information if it changes. Consistent with legal requirements, we also permit you to obtain a copy of information that we hold about you, and allow you to unsubscribe from any services that we offer, if you no longer want to participate. Please use our Contact Us link on this site for additional information, or email us at

Right to Request Data Deletion

According to the current legislation (General Data Protection Regulation - GDPR), you have the right to request the deletion of the personal data collected by Carenity.
To exercise your rights, you may, if you are logged into your Carenity account, send a private message to your Community manager by clicking here.
You may also contact Carenity Data Protection Officer for any questions regarding your personal data, at the following e-mail address:

Transfer of Your Personal Data

The processing of your personal data may involve cross-border data exchanges within employees of the company in the US.

Where applicable and as the US does not benefit from an adequacy decision under Article 45 of the GDPR, we use various measures to ensure that your personal data transferred to the US is adequately protected, such as signing the standard contractual clauses adopted by the European Commission.

Unsubscribe Option

If you no longer want to participate in our site or receive a newsletter or other information service that you signed up for, you may ask us to unsubscribe by contacting us at

Data Retention

We will retain your information for as long as your account is active or as needed to provide you services. If you wish to cancel your account or request that we no longer use your information to provide you services, contact us at We will retain and use your information as necessary to comply with our legal and business obligations.

Links to Other Websites

Our website may contain links to other websites that are not owned or operated by Carenity. You should carefully review the privacy policies and practices of other websites, as we cannot control and are not responsible for privacy policies or practices of third-party websites that are not ours. For links to other Carenity websites, such as those available to residents of other countries, we refer you to the privacy statements on those sites as they may differ from those on this website.

Changes to This Privacy Policy

As we continue to provide additional services and as the privacy laws and regulations evolve, it may be necessary to revise or update this Privacy Statement. We encourage you to review this Privacy Statement from time to time, as you return to our site, so that you are familiar with any changes. Please note that we use personal information in accordance with the Privacy Statement that was in effect at the time the information was collected.

Contact Us

If you have any questions, please email us at You may also write to us at CARENITY 1 rue de Stockholm 75008 Paris, FRANCE.

Last updated: 2/28/23