Privacy Policy

Privacy Policy

Last updated on 11/29/2022

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has a strong commitment to privacy, recognizing that we are a public association. This statement outlines the policies and procedures concerning information gathering and dissemination practices for our organization.

Please read this Privacy Policy carefully to understand how we treat your personal information and what choices and rights you have in this regard. If you do not agree with the terms and conditions of this Policy, you should not access or use the website or our services.

This Privacy Policy applies to information we collect:

  • On our websites.
  • In e-mail, text and other electronic messages between you and our website.
  • When you sign up for any events that we host.
  • When you interact with us on any app on your computer or mobile device.
  • When you interact with us in another way – for example, contacting us with an inquiry.

This Policy outlines our policies and practices regarding your personal information (information relating to you from which you can be identified) and how we will treat it. This Policy may change from time to time (see Changes to This Policy section below), so please check the Policy periodically for updates. If any questions arise about the meaning or interpretation of this Policy, the English-language version of this Policy is the official text.

Collecting and Using User Information

CARRA collects information in different ways from those who access our websites, apps, and other services (“CARRA sites”). We primarily use this information to provide a customized experience as you use CARRA sites and do not share this information with third parties. However, we may disclose personal information collected if we have received your permission beforehand or in very special circumstances, such as when we believe that such disclosure is required by law, or in other special cases described below.

Contact Forms

CARRA sites collect information directly from users to request information, products, and services. We may collect users’ contact information (e.g., name and email address) and financial information (e.g., account or credit card numbers). Financial information is used to bill the user for products and services and is managed in accordance with the Payment Card Industry Data Security Standard (PCI-DSS). Contact information collected is used to fulfill orders, contact the user regarding any questions regarding fulfillment, and to provide the user with information about our association, including promotional materials. Users may opt out of receiving future communications at any time by emailing [email protected].


A “cookie” is a small data file that can be placed on your computer or mobile device when you visit websites. CARRA may use cookies to collect, store, and sometimes track information for customizable and personalized services and for marketing purposes. Most browsers accept cookies automatically, but can be configured not to do so or to notify the user when a cookie is being used. If you wish to disable cookies, refer to your browser help menu to learn how to disable cookies. If you disable cookies, it may interfere with the proper functioning of the website.

Additionally, we may provide links to external, non-CARRA sites where you are prompted to log in or that are customizable, for which you may be required to accept cookies to use. Third parties and other non-CARRA websites may also use their own cookies. We do not control use of these cookies and expressly disclaim responsibility for information collected through them.

Finally, cookies are used to support Google Analytics functionality for website activity tracking. Google Analytics stores information at Google. For more information on Google Analytics, please see

Automated Information

When you visit CARRA sites, we may automatically collect information from your browser or your mobile device, such as Internet Protocol (IP) address and unique device identifier, cookies, and data about which pages you visit. This information may be used to protect CARRA sites and services, analyze and improve our sites and services, and to provide users with a more personalized experience.

Email Interconnectivity

If you receive email communications from us, we may use certain tools to capture data related to when you open our messages, click on hyperlinks or banners it may contain, and make purchases. We use this information to enhance and support our marketing and sales operations.

Mailing Lists

When you sign up for one of our mailing lists, newsletters, or marketing list, we collect your contact information, including your email address and postal address. Users may opt out of receiving future communications at any time by emailing [email protected].

Surveys, Questionnaires, Social Media

When you submit a survey, questionnaire, contest entry, or similar form by using CARRA sites, social media, or other online survey tools and platforms accessible via CARRA sites, we or third parties operating those tools, platforms, or social media websites may collect your social media handle or profile, or any other identifier that you use to be contacted online or offline. This information may also include personally identifiable and business information, but only to the extent that you voluntarily provide it to us.

Use of Personal Information

In addition to the uses described above, we use the personal information collected in an effort to improve your experience on CARRA sites, to provide services to you, and to communicate with you about the information you have requested. We may also use personal information to help target specific offers to you and to help us develop and improve our website and services. Additionally, we may use your personal information in the following ways:

  • To provide you with services you have requested and to manage our relationship with you, including administering your account, processing payments, accounting, auditing, billing and collection and taking other steps necessary to the performance of our business relationship with you;
  • To present and improve contact and functionality;
  • To determine user interests, needs and preferences;
  • To provide notice of changes to our website or the services we offer or provide through it;
  • To conduct research and analysis;
  • To develop new products and services;
  • To manage and maintain the security of our website and services;
  • To market our services to you. We will only provide you with marketing-related information after you have, where legally required to do so, opted in to receive those communications and having provided you with the opportunity to opt-out of such communications at any time. We do not sell, rent, or lease our customer lists to third parties.

Disclosure of Personal Information

It is the policy of CARRA not to use or share the personal information about users in ways unrelated to the ones described above without also providing you an opportunity to opt out or otherwise prohibit such unrelated uses. However, CARRA may disclose personal information about users, or information regarding your use of our site, for any reason if, in our sole discretion, we believe that it is reasonable to do so, including: to satisfy laws such as the Electronic Communications Privacy Act, regulations, or governmental or legal requests for such information; to disclose information that is necessary to identify, contact or bring legal action against someone who may be violating our Website Terms of Use or other user policies; to operate the site properly; or to protect CARRA and our users.

Updating User Profile

Individuals who have created an account with CARRA have the ability to update or change all personal information provided. To do so, email [email protected] with updated information.

CARRA provides individuals the opportunity to opt out of receiving communications from us when we request information about the user. To update these preferences, users may email [email protected].


We maintain industry-standard technical and organizational measures to prevent your personal information from being accidentally lost, used, or accessed in an unauthorized manner, altered or disclosed during collection, storage, and processing. While our security measures seek to protect your personal information in our possession, no security system is perfect and we cannot guarantee that your personal information will remain absolutely secure in all circumstances or that any privacy settings or security measures contained on CARRA sites cannot be circumvented.

The majority of communications on CARRA sites, including any submissions through available forms, are sent through secure HTTPS protocol and may also be delivered using regular e-mail. E-mail, while convenient, does pose some risks (e.g. e-mail is not a secure form of communication, is unreliable, can be forwarded, etc.).

The safety and security of your personal information also depends on you. Where you use a password for access to restricted parts of the Website, you are responsible for keeping the password confidential. Do not share your password with anyone.

If a security breach causes an unauthorized intrusion into CARRA sites or systems that compromises your data and that we become aware of, we will notify you and any applicable regulator when we are required to do so by applicable law.

Updating Your Personal Information

If the personal information you have provided to us changes, please let us know. For instance, if your email changes, you wish to cancel any request you have made of us, or if you become aware of inaccurate personal information about you, use our Contact Us details to update your information. You may also edit your account details if you have a user account through CARRA sites.

We are not responsible for any losses arising from any inaccurate, inauthentic, deficient or incomplete personal data that you provide to us.

Protecting Children

CARRA sites are not intended for use by children under 16 years of age and CARRA does not knowingly collect personally identifiable information from children under 16 years of age, unless provided for research purposes and under separate Terms of Use and research protocols that are expressly indicated on these specific CARRA sites. If you are under 16, do not use or provide any information on CARRA sites or provide any information about yourself to us, including your name, telephone number, email address or any screen name or user name you may use. If we learn we have collected or received personally identifiable information from a child under 16 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 16, please contact us at [email protected].

Links to Other Sites

This site contains links to other websites. CARRA is not responsible for the privacy practices or content of other websites. We encourage you to read the privacy statements of each website that collects your personally identifiable information.

Changes to This Policy

CARRA reserves the right to revise, amend, or modify this Privacy Policy, our website, and our other policies and agreements at any time and in any manner. Notice of any revision, amendment, or modification will be posted in accordance with CARRA sites’ Terms of Use. By continuing to use our Website, you agree to any changes in the Policy.

Governing Law

This Privacy Policy and any disputes related thereto shall be governed by and construed in accordance with the laws of the State of California, exclusive of its choice of law rules.

Contact Us

To ask questions or comment about this Policy or CARRA’s privacy practices, contact us at [email protected].

Our mailing address is:

1050 Connecticut Ave, NW
Suite 500
Washington, DC 20036