Sjögren’s Foundation Privacy Notice

The Sjögren’s Foundation (“Sjögren’s Foundation”) understands the importance of your privacy. This Privacy Notice applies when you visit any Websites or services owned and operated by Sjögren’s Foundation, including our Websites at sjogrens.org and the professional Sjögren’s Training and Education Platform  (the “Websites”), interact with us on or offline, attend our events, or use any and all of our products and services (collectively, our “Services”). Our Privacy Notice describes our collection of information during your interactions with our Services, and the rights and choices you have regarding your information. 

By using our Services, you acknowledge you have read and understand our Privacy Notice. 

Personal Information that We Collect

When operating our Services, the Sjögren’s Foundation collects data, including personal information about you. The types of information we collect depends on your level of engagement and how you interact with the Services. “Personal information” means information that can reasonably be linked to a particular individual. The Sjögren’s Foundation may collect the following categories of personal information about you when you visit our Websites, contact us by mail or over the phone, or register for, participate in, or interact with us in connection with our events and programs.

The types of personal information and data we may obtain include:

  • Your name, birth date, diagnosis date, postal address, zip code, telephone number, e-mail address and other contact information.
  • Demographic information, including gender and race. 
  • Information about contributions you make to us, including amounts, payment card details or other account information.
  • Information about volunteer activities in which you are interested or engaged.
  • Information you provide to become a member of Sjögren’s Foundation, including log in information, payment information, and profile information.
  • Certain information you choose to share concerning your health or your relationship to Sjögren's disease, such as the work you engage in, the type of symptoms and any disease experience you may have, or that your loved ones may experience.
  • Information you provide about other individuals such as their name, postal address, telephone number, email address or other contact information.
  • The geographic location of your computer system or mobile device from which you access our Websites.
  • Social media handles, content and other data posted on our official social media pages or elsewhere on the Internet (such as other public locations), and information (such as email address and other information you allow to be shared) we obtain through Sjögren’s Foundation-related social media apps, tools, widgets and plug-ins.
  • Information about your practice, employment, or other business information. 

We also may receive personal information about you from third parties, including public databases, social media platforms, or third-party partners such as analytics or marketing providers.

Automated Data Collection Technologies

When you visit or interact with Sjögren’s Foundation-related tools, widgets or plug-ins, we may collect certain information by automated means, such as cookies and web beacons. 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 or apps to web servers and may be used to transmit information back to a web server. Through these automated collection methods, we obtain and store "clickstream" data.

The information we collect in this manner may include IP address, unique device identifier, browser characteristics, device characteristics, operating system, language preferences, referring URLs, information on actions taken, and dates and times of activity. We may link certain data elements we have collected through automated means, such as your browser information, with other information we have obtained about you to let us know, for example, whether you have opened an email we sent to you. 

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 the features of our Websites. Both we and others (such as our advertising networks) may collect personal information about our visitors' online activities, over time and across third-party Websites, when using our Websites and apps.

On our Website, https://sjogrens.org/, Google Analytics is one of the providers we use to collect analytics information. These data analytics and online advertising providers may combine and use data collected through your use of the Websites with data they collect over time and across different Websites for their own purposes. You can learn about how Google collects and processes data at https://policies.google.com/technologies/partner-sites. You can learn about the controls Google offers to manage the collection and use of your information at https://policies.google.com/privacy. We recommend that you review these other entities’ privacy policies.

We incorporate “pixels” provided by Meta Platforms, Inc. on our Website at https://sjogrens.org/. This enables us to track user behavior after a user clicks on a Facebook ad and is redirected to our Website. By doing so, we can assess the effectiveness of Facebook ads for statistical and market research purposes and sometimes retarget certain users. Please note that the data collected through this process remains anonymous to us, meaning we do not have access to personal information of individual users. However, Facebook stores and processes this data. Therefore, we are providing you with this information based on our current understanding. It is important to be aware that Facebook may associate this information with your Facebook account and utilize it for its own promotional activities, in accordance with Facebook’s Data Usage Policy. You have the option to authorize Facebook and its partners to display advertisements on and off Facebook (see here). Additionally, a cookie may be stored on your computer for these purposes. 

Interest-Based Advertising

We may collect information on our Websites about your online activities for use in providing you with advertising about Sjögren’s Foundation events, activities and fundraising efforts tailored to your individual interests.

You may see certain ads on other Websites because we participate in advertising networks.  Ad networks allow us to target our messaging to users through demographic, interest-based and contextual means. These networks track your online activities over time by collecting information through automated means. The networks use this information to show you advertisements that may be tailored to your individual interests. The information our ad networks may collect includes information about your visits to Websites that participate in the relevant advertising networks, such as the pages or advertisements you view and the actions you take on the Websites. This data collection takes place both on our Websites and on third-party Websites that participate in the ad networks. This process also helps us track the effectiveness of our marketing efforts. To learn how to opt out of this ad network interest-based advertising, see the section How to Contact Us below.

How We Use the Personal Information We Collect

We may use information that we collect to:

  • Manage our foundation and provide our services
  • Conduct research and improve our services
  • Establish and manage your Sjögren’s Foundation membership.
  • Receive and process donations.
  • Fulfill requests for volunteer opportunities.
  • Coordinate gift memberships, including contacting recipients of gift memberships.
  • Communicate with you about information including fundraising or volunteer opportunities or initiatives and share news and updates with you.
  • Distribute and process voluntary surveys seeking feedback for quality and service improvement purposes.
  • Communicate about, and administer your participation in, special events, programs, and surveys.
  • Enable you to post on our blogs and interact with the Sjögren’s Foundation through social media.
  • Operate, evaluate and improve our organization (including developing new products and services; managing our communications; determining the effectiveness of our fundraising, marketing and advertising; analyzing and enhancing our products, services, websites, apps, and platforms; protecting the security of our networks and information systems; performing accounting, auditing, invoicing and reconciliation activities; and improving and maintaining the quality of our customer service activities).
  • Perform data analyses (including market research and analytics, trend analysis and profiling, financial analysis and anonymization of personal information).
  • Protect against, identify and prevent fraud and other prohibited or illegal activity, claims and other liabilities.
  • Comply with applicable international laws and our policies.

We use information collected online through automated means for purposes such as (i) customizing our users' visits to our Websites, (ii) delivering content (including advertising) tailored to our users' interests and the manner in which our users browse our Websites, and (iii) managing our business. We may supplement data we collect through automated means with information about your location and other information you have provided to present you with content that may be of interest to you.

We also use this information to help diagnose technical and service problems, administer our Websites, identify users of our Websites, and gather demographic information about our users. We use clickstream data to determine usage patterns and how we may tailor our Websites and apps to better meet the needs of our users.

Disclosure of Personal Information

We do not share personal information about you with third parties except as described in this Privacy Notice.

  • We share personal information with third parties who perform services on our behalf. These third parties are not authorized by us to use or disclose the information except as necessary to perform services on our behalf or comply with legal requirements.
  • We may offer deidentified data to third parties for research and understanding patients with the disease or providers office capabilities.
  • We also may disclose information about you (i) if we are required to do so by law, regulation or legal process (such as a court order or subpoena), (ii) in response to requests by government agencies, such as law enforcement authorities, or (iii) when we believe disclosure is necessary or appropriate to prevent physical harm or financial loss in connection with an investigation of suspected or actual illegal activity.
  • We reserve the right to transfer any information we have about you in the event we sell or transfer all or a portion of our organization or assets to a third party (including in the event of a reorganization, dissolution or liquidation).

How We Secure Your Data

We maintain administrative, technical and physical safeguards designed to protect the personal information you provide against accidental, unlawful or unauthorized access, disclosure or use. Although we have measures in place reasonably designed to protect against unauthorized access, the safety and security of your information also depends on you. No internet transmission is ever fully secure, and we cannot guarantee that information transmitted via our Services will remain confidential at all times. We urge you to be careful about giving out information in public areas of the Websites and our social media and to refrain from providing any of the information necessary to access your membership to any other person.

Your Choices About How We Use and Share Your Information

You can opt out from receiving communications from us for promotional or fundraising purposes or limit the types of promotional, fundraising, or other communications we send by visiting our  Subscription Options & Preferences form.

In addition, all Sjögren’s Foundation e-newsletters and direct email communications for promotional or fundraising purposes have easy-to-follow instructions at the bottom of each communication to select your email preferences or fully unsubscribe from emails.

Children’s Privacy

The Sjögren’s Foundation has programs that support children and their families including support groups, educational conferences, and opportunity to publicly share a child’s story. Protecting the privacy of children is especially important, and for this reason we have adopted certain policies and procedures. We do not seek to collect personal information from children under the age of 18 without parental supervision or consent. If you are under the age of 18, do not provide information to us without parental supervision and consent. If we find information has been submitted without parental supervision and consent, we will immediately delete it. 

As described in this Privacy Notice, we directly collect personally identifiable information from a child when a user submits a form through our website. This information may include the child's name, age, and gender. We also request a name, email address, mailing address and telephone number of the child's parent or guardian so that we may seek parental permission to post personal stories submitted by the child.

Use and Sharing of Information

We collect from children personal stories that we may publish only after obtaining parental permission.

We do not share children’s personal information with anyone other than those who provide support for the internal operations of the Websites. 

Parental Review

Parents can review the information that we have collected from their children online, prevent the further use or maintenance of such information, or direct the deletion of their children's personal information by contacting us via the contact information provided below.

Links to Other Websites

This Privacy Notice applies only to our Services. We do not control the privacy practices or the content of any of our business partners, advertisers, sponsors, or other third parties we link to from our Services.  We do not endorse, approve, or certify content from third parties, and we do not guarantee the accuracy, completeness, efficacy, or timeliness of the information they provide. You should check the applicable Privacy Notice of the Websites sponsor when linking to other Websites.

Information Retention 

The Sjögren’s Foundation uses several criteria to determine how long we should keep categories of Personal Data. We will retain your Personal Data for the time period reasonably necessary to achieve the business purposes outlined in this Privacy Notice to the extent permitted by applicable law.

Information Transfer and Storage

Information we collect about you is transferred, processed, and accessed by us in the United States, or another country where we or our service providers operate. Please be aware your information may be transferred to, and maintained on, computers located outside of your state or country where privacy laws may differ from and may not be as protective as those where you live. 

If you are located in the European Economic Area (“EEA”) or other regions with laws governing data collection and use that may differ from U.S. law, please note that we may transfer information to a country or jurisdiction that does not have the same data protection laws as your jurisdiction, as disclosed in this Privacy Notice. 

How to Contact Us

Questions or Concerns

If you have  questions or concerns about how we store, protect and use your personal data, or if you would like us to change or remove your personal data,  please feel free to contact us at info [at] sjogrens [dot] org (info[at]sjogrens[dot]org) or write to:

Sjögren’s Foundation
c/o Privacy Requests/Marketing Department
10701 Parkridge Blvd, Ste 170
Reston, VA 20191

Access & Correction

You may access and update certain personal information by accessing your member profile at sjogrens.org.

California Residents

Users who reside in California and have provided personal information to us may request information about our disclosure of certain categories of personal information to third parties for their direct marketing purposes. Such requests must be submitted to us at the following address: Sjögren’s Foundation, Attn: Privacy Requests/Marketing Department,. Within thirty days of receiving such a request, we will provide a list of the categories of personal information disclosed to third parties for third-party direct marketing purposes during the immediately preceding calendar year, along with the names and addresses of the third parties that received the personal information.

Do Not Track Signals. CalOPPA requires us to let you know how we respond to web browser Do Not Track (“DNT”) signals. DNT is a privacy preference you can set in your web browser to indicate that you do not want certain information about your webpage visits collected across Websites when you have not interacted with that service on the page. For details, including how to turn on DNT, see here. Because there currently isn’t an industry or legal standard recognizing or honoring DNT signals, we don’t respond to them at this time. 

Residents of the European Union and United Kingdom 

Those in the EU and UK may benefit from a number of rights in relation to your information that we process. Some rights apply only in certain limited cases, depending on your location. Although some of these rights apply generally, certain rights will only apply to limited individuals or circumstances.

To the extent that these laws apply, you may exercise the following rights: 

  • Right to Access. Note that much of the information you are entitled to know or access is disclosed in this Privacy Notice. With this said, you have the right to know about our information practices. You also have the right to access the categories of data we collect, with whom we share or sell that information, and, in some cases, what specific personal information we associate with you or your account. 
  • Right to Rectification. You may request we correct or rectify inaccurate information we have collected about you.
  • Right to Erasure. You may request that we delete the personal information we have collected about you. Depending on the applicable law, in some cases we are required or permitted to retain your information, even if you validly requested we delete or erase it.
  • Right to Restrict Processing. If we process your information based on our legitimate interests as explained in this Privacy Notice, you may have the right to restrict processing in certain circumstances. 
  • Right to Object. If we process your information based on our legitimate interests as explained in this Privacy Notice, or in the public interest, you can object to this processing in certain circumstances. Where we use your data for direct marketing purposes, you can always object using the unsubscribe link in such communications or changing your account settings.
  • Right to Data Portability. If you request a copy of your specific information then we will provide it in an easily accessible format.
  • Right to Lodge a Complaint. You may be entitled to lodge a complaint with your data privacy regulatory authority. 

We generally process Personal Information of those residing in the European Union on the legal basis of our legitimate interests in performing the function or service you requested. Where appropriate, we may rely on alternate legal bases, such as your consent to certain types of processing. Where we process your personal information on the basis of consent, we will clearly obtain your opt-in consent. 

Changes to this Privacy Notice

We reserve the right to make changes to this Privacy Notice at any time without prior notice. We encourage you to review our Privacy Notice from time to time. Your continued use of our Websites or our Services after the changes are effective constitutes your acceptance of the Privacy Notice.

Effective Date: December 2, 2024

Updated: December 2, 2024