Our Privacy Policy

Beyond Celiac (“Beyond Celiac,” “we” or “us”) values your privacy.  In this Privacy Policy (“Policy”), we describe how we collect, use, and disclose information that we obtain about visitors to our website Go.BeyondCeliac.org (the “Site”) and the services available through our Site (collectively, the “Services”), and how we use and disclose that information.

By visiting the Site, or using any of our Services, you agree that your personal information will be handled as described in this Policy. Your use of our Site or Services, and any dispute over privacy, is subject to this Policy and our Terms of Use, available at Go.BeyondCeliac.org/Terms-of-Use, including its applicable limitations on damages and the resolution of disputes. The Go Beyond Celiac Terms of Service are incorporated by reference into this Policy.

EFFECTIVE DATE: March 30, 2017

Information We Collect

We may collect information about you directly from you and from third parties, as well as automatically through your use of our Site or Services.

Information We Collect Directly From You. You may view our Site and use many of our Services without submitting any personal information. However, we may collect information from you if you agree to participate in surveys, questionnaires or research projects, including name, contact information, demographics, health information, health history and opinions related to medical practices and research. If you sign up to receive newsletters, information, alerts or similar content from us, or from our partners, we will collect your name and contact information in order to provide those services.  In addition, if you choose to make a donation to us, we receive information about your donation including your name and contact information, donation amount and any other information you submit (other than your credit card number); we use a third party  to process credit card payments and do not collect or receive your credit card number directly.

Content You Post.  Through our Site, you may be able to comment or post other content to our Site.  If you do, we may collect information about you and the content that you post. 

Information We Collect Automatically. We may automatically collect the following information about your use of our Site or Services through cookies, web beacons, and other technologies: your domain name; your browser type and operating system; web pages you view; links you click; your IP address; the length of time you visit our Site and or use our Services; and the referring URL, or the webpage that led you to our Site, date and time stamp for your access and activities; device ID; domain name; page views and referring URL.  We may combine this information with other information that we have collected about you, including, where applicable, your user name, name, and other personal information  Please see the section “Cookies and Other Tracking Mechanisms” below for more information.

How We Use Your Information

We use your information, including your personal information, for the following purposes:

  • To provide our Services to you, to communicate with you about your use of our Services, to respond to your inquiries, and for other customer service purposes.
  • To tailor the content and information that we may send or display to you, to offer location customization and personalized help and instructions, and to otherwise personalize your experiences while using the Site or our Services.
  • To send you newsletters, alerts, content and other information that you request. For example, we may use your information, such as your email address, to send you news and newsletters, special offers, and promotions, or to otherwise contact you about products or information you have indicated interests you.
  • To conduct research and analysis, or to facilitate or enhance the conduct by others of research and analysis of celiac disease.
  • To inform or support the development of or improvements to strategies, programs, treatments or content related to celiac disease, whether by us or by third parties.
  • To better understand how users access and use our Site and Services, both on an aggregated and individualized basis, in order to improve our Site and Services and respond to user desires and preferences, understand trends, and for other research and analytical purposes.
  • To develop aggregate or de-identified reports to better understand celiac disease and advance celiac disease research.

How We Share Your Information

We may share your information, including personal information, as follows:

  • Other Users. Any information that you post to our Site, including, without limitation, reviews, comments, and text will be available to, and searchable by, all other registered users of the Site and Services unless you have told us not to make it available.   
  • Research Partners. If you disclose information about yourself and history with celiac disease to us (e.g., such as through surveys and questionnaires), unless you have told us not to, we may include your information in our research or share that information with our research partners, but we will first remove your user name and other direct identifiers.  This information may be used to conduct research studies and perform similar analysis, and may form the basis for new or improved treatments, including but not limited to treatments and therapies designed to reduce or eliminate the impact and effect of celiac disease on persons living in the United States and elsewhere in the world, or a cure.  We may also contact you to invite you to participate in additional research; as part of this, you may be asked to share additional information with us and with the research organization.  Your participation in additional research studies is voluntary and will require additional consent.
  • Service Providers. We may disclose aggregated information we collect from you and other registrants to third party vendors, service providers, contractors or agents that seek or that perform functions on our behalf in pursuit of our mission to drive improvements in research and diagnosis and accelerate the discovery of new treatments and a cure.
  • Business Transfers. If we are acquired by or merge with another company, or if substantially all of our assets are transferred to another company as part of a sale, merger, bankruptcy proceeding or otherwise, we may sell or transfer the information we have collected from you to the other or combined company.
  • In Response to Legal Process. We also may disclose the information we collect from you in order to comply with the law, a judicial proceeding, court order, or other legal process, such as in response to a court order or a subpoena.
  • To Protect Us and Others. We also may disclose the information we collect from you where we believe it is necessary to investigate, prevent, or take action regarding illegal activities, suspected fraud, situations involving potential threats to the safety of any person, violations of our Terms of Use or this Policy, or as evidence in litigation in which Beyond Celiac is involved.
  • Aggregate and De-Identified Information. We may create and share aggregate or de-identified information about users with third parties for market research, trend analysis, medical and scientific research or similar purposes. However, such information will not identify a particular user.
  • NOTE: Information that you provide, including information posted to the Site regarding your experience with or regarding celiac disease, is the property of Beyond Celiac.  You retain no rights to that information, and shall not be entitled to rights in or compensation for providing this information, even if such information is or is suggested to have been used to support or develop new treatments and/or a cure for celiac or any related disease or symptom.

Our Use of Cookies and Other Tracking Mechanisms  

We and our third party service providers use cookies and other tracking mechanisms to track information about your use of our Site or Services. We may combine this information with other personal information we collect from you (and our third party service providers may do so on our behalf).

Currently, our systems do not recognize browser “do-not-track” requests. You may, however, disable certain tracking as discussed in this section (e.g., by disabling cookies).  We do not track your activity after you leave our Site.

Cookies.  Cookies are alphanumeric identifiers that we transfer to your computer’s hard drive through your web browser for record-keeping purposes. Some cookies allow us to make it easier for you to navigate our Site and Services, while others are used to enable a faster log-in process or to allow us to track your activities at our Site and Service. Most web browsers automatically accept cookies, but if you prefer, you can edit your browser options to block them in the future. The Help portion of the toolbar on most browsers will tell you how to prevent your computer from accepting new cookies, how to have the browser notify you when you receive a new cookie, or how to disable cookies altogether. Visitors to our Site who disable cookies will be able to browse certain areas of the Site, but some features may not function.

Clear GIFs, pixel tags and other technologies. Clear GIFs are tiny graphics with a unique identifier, similar in function to cookies. In contrast to cookies, which are stored on your computer’s hard drive, clear GIFs are embedded invisibly on web pages. We may use clear GIFs (also known as web beacons, web bugs or pixel tags), in connection with our Site to, among other things, track the activities of Site visitors, help us manage content and compile statistics about Site usage. We or our service providers may also use clear GIFs in HTML emails to our customers to help us track email response rates, identify when our emails are viewed and track whether our emails are forwarded.

Third Party Analytics. We use automated devices and applications, such as Google Analytics(link is external), to evaluate usage of our Site and Services. We also may use other analytic means to evaluate our Services. We use these tools to help us improve our Services, performance and user experiences. These entities may use cookies and other tracking technologies to perform their services. We do not share your personal information with these third parties.  

User Generated Content

We may invite you to post content on our Site, including your comments, opinions, pictures, and any other information. If you post content to our Site (e.g., comments, opinions, answers to surveys, etc.), and elect to share it with other registered users, all of the information that you post will be available to all registered users on our Site. If you chose to post your own content on our Site or Services, your posting may become public and Beyond Celiac cannot prevent such information from being used in a manner that may violate this Policy, the law, or your personal privacy.

Third-Party Links

Our Site and Services may contain links to third-party websites. Any access to and use of such linked websites is not governed by this Policy, but instead is governed by the privacy policies of those third party websites. We are not responsible for the information practices of such third party websites.

Security of My Personal Information  

We have implemented commercially reasonable precautions to protect the information we collect from loss, misuse, and unauthorized access, disclosure, alteration, and destruction. Please be aware that despite our best efforts, no data security measures can guarantee 100% security. You should take steps to protect against unauthorized access to your computer or device, among other things, signing off after using a shared computer.  You should not open or accept invitations sent by electronic mail or otherwise that purport to be from Beyond Celiac, the website or any other user of or visitor to the Site unless you are absolutely certain of the identity of the sender.  While Beyond Celiac has implemented precautions to guard against the theft or misuse of personal information provided by visitors to the Site, visitors should not provide or confirm personal financial information to any person purporting to be acting on or behalf of Beyond Celiac or the Site. 

What Choices Do I Have Regarding Use of My Personal Information?

During the registration process you will decide if you want to block access to and use of the information you contribute to the Site for specific purposes. You can change your selections at any time using the settings section of your personal account/personal dashboard. Once you change your privacy selections, future access to any information you have contributed will be governed by your new selections. However, please note, information previously accessed by community members, researchers or disclosed publically by Beyond Celiac, based on your previous privacy selections, cannot be recovered. We may send periodic informational emails to you. You may opt-out of such communications by following the opt-out instructions contained in the e-mail. Please note that it may take up to 10 business days for us to process opt-out requests. If you opt-out of receiving emails about information we think may interest you, we may still send you e-mails about your account or any Services you have requested or received from us.

Children Under 13

Our Services are not designed for children under 13. We will not knowingly collect personal information from children under 13, without their parents’ consent.

Contact Us

If you have questions about the privacy aspects of our Services or would like to make a complaint, please contact us at [email protected].

Changes to this Policy

This Policy is current as of the Effective Date set forth above. We may change this Policy from time to time. We will post any changes to this Policy on our Site, Go.BeyondCeliac.org/PrivacyPolicy. If we make any changes to this Policy that materially affect our practices with regard to the personal information we have previously collected from you, we will endeavor to provide you with notice in advance of such change by highlighting the change on our Site, or emailing your email address of record with us.