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Privacy Policy

Updated May 21, 2018 The Foundation for Brain Science and Immunology, Inc. t/a PANDAS Physicians Network (“PPN”, “we”, “us” or “our”) knows that our users (“you,” “your”) care about how you r personal information is used and shared, and we take your privacy seriously. This Privacy Policy describes the overall privacy practices of PPN at www.pandasppn.org (“Website”) and used in Services we provide. This Privacy Policy covers only data collected through the Website and not any other data collection or processing, including, without limitation, data collection by third parties who provide products and services on the Website (“Service Providers”), third party web pages, or websites, products, or services to which we link that do not display a direct link to this Privacy Policy. If we collect data from or about you, we will use it according to the Privacy Policy in effect at the time the data is gathered. This Privacy Policy, together with the Website’s Terms of Use, contains the entire agreement between you and PPN with respect to the Website. Please be aware that our Privacy Policy may be changed by updating this page. You should review this Privacy Policy periodically to ensure you are in agreement with any updates or changes. Your continued use of our website following any changes will mean you accept such changes.


The Website is dedicated to helping physicians understand, diagnose and treat Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus’ (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and provides information about PANDAS and PANS for physicians, including: diagnostic guidelines; treatment options; research library; PPN physician directory; information about current research, trials, and studies concerning PANDAS and PANS; and an email group where  medical professionals that are approved PPn members can discuss PANDAS and PANS, please contact PPN at: support@pandasppn.org.


The information we collect about you includes:

Non-Personally Identifiable Information:

The Website and our third party Service Providers may collect or request anonymous or non-personally identifiable information (“Non-PII”) from visitors. Non-PII cannot identify a specific individual unless combined with Personally Identifiable Information. Examples of Non-PII that may be requested in registering or completing registration forms on the Website or using our Services may include: state, ZIP code, and PANS and PANDAS keywords; and for users who are medical professionals: medical practice, area of medical specialty, caregiving practice, practice name, hospital name, city, and national provider information.

Cookies and Web Browsing Data

We and our Service Providers collect anonymous information known as “Web Browsing Data” by storing small computer files on your computer, including cookies, web beacons, tags, flash cookies, updating log files, etc. (collectively, “Cookie(s)”) to personalize your visit and provide Services. Web Browsing Data is Non-PII. We or our Service Providers may collect Web Browsing Data such as: the Internet Protocol (IP) address of your computer or Internet Service Provider, your browser type, domain, the date and time of your visit, preferences, web pages you view on our Website, your responses to our display ads on other websites and websites you visit after the Website. We may use Google Analytics to collect Web Browsing Data to analyze the web traffic on our Website and other websites you visit to offer you Services.

California Online Personal Privacy Act Disclosures

(1) This Website does not collect personally identifiable information (“PII”) from visitors to the Website without separate consent. We do not track users after they leave our Website, and therefore do not interfere with browser settings or “do not track” signals. (2) This Website does not authorize Service Providers or other third parties to (i) collect PII from visitors to the Website without separate consent, or (ii) to track users after they leave our Website. Users logged in to social media platforms operated by Service Providers such as Google may be tracked across multiple websites and such Service Providers may disregard the privacy settings in your web browsers as disclosed in such Service Providers’ privacy policies.

Personally Identifiable Information:

Our Website and our Service Providers only collect personally identifiable information (“PII”) with your consent. Collection of PII occurs when you choose to share PII with us when you register for memerbship, request information from us, sign up for newsletters or our email list, participate in a survey, or otherwise contact us. A copy of your personal information PPN has on file can be obtained by contacting PPN at support@pandasppn.org.

PII You Provide

Examples of PII you voluntarily submit include: first and last name, medical and caregiver specialties, national provider information number, practice name, email address, postal address, telephone number, and c.v. information.

Sensitive Personal Information

Some Services for users who are medical professionals may request sensitive personal information to determine eligibility for participating in the forum, or identify appropriate Services. The Website may collect “Sensitive Personal Information” from you when you fill out registration forms and/or submit information in registering for access to the forum on the Website, including: national provider information and identification number, physician license status, etc. You may elect not to provide such sensitive PII but that may limit your use of the Website. A copy of your personal information PPN has on file can be obtained by contacting PPN at support@pandasppn.org. We do not use Cookies to enable ad targeting based on Sensitive Personal Information.  

Practitioner Directory

By ticking the box on the membership application titled “I would like to be added to the online PPN Practitioner Directory”, you agree to have your medical practice information shared via email and listed online at www.pandasppn.org/practitioners. Your email address will be kept private. If you wish to have your information removed from the directory, contact us at support@pandasppn.org.

Email Group

If you use the PPN Email Group, you should be aware that any content (personally identifiable information, images, captions, comments, etc.) you submit there can be read, collected, or used by other users of the email group, and could be used to send you unsolicited messages. We are not responsible for the personally identifiable information you choose to submit in the email group. The PPN Email Group is implemented through a third party, Google.

Deleting your Personal Information

A user can have all data erased and forgotten by PPN controlled databases and all future collections stopped. If you would like your information to be deleted, contact PPN at support@pandasppn.org.

Information about You from Other Sources:

We and our Service Providers may collect personal information about you on the Website and from other sources, including commercially available sources. All the information we collect about you may be combined to personalize your experience, provide you and our clients with Services, to improve our Website and Services, to provide relevant advertising to users, and for other marketing efforts.


Non-PII that we or our Service Providers collect is used to improve Services and Website, better provide information about PANDAS and PANS, and connect physicians to share information and discuss PANDAS and PANS. If you elect to provide PII, we may utilize such data to connect physicians to share information and discuss PANDAS and PANS.

Sharing PII with Service Providers and Clients

We share information submitted to the Website by physicians with other physicians and medical professionals. PII submitted by physicians in connection with PANDAS and PANS may be shared after obtaining the physician’s consent be shared with visitors to the Website looking for information about physicians who specialize in PANDAS and PANS. We will use and retain physician users’ PII and any Sensitive PII contained in curriculum vitae submitted to the Website.

Visitors who Request Services via the Website

Physicians and medical professionals users who volunteer PII on our Website consent to be contacted by us, or visitors to the Website.

Email Communications and Promotional Offers

As part of the Services, you may receive communications from us, whether by email or other means. We may send you email, contact you, or engage you in other communication that relates to your use of the Website. We may send offers to certain users on behalf of other businesses. If you do not wish to receive email communications about the Website or promotional offers, please use the “UNSUBSCRIBE” link at the bottom of our email or contact us at “support@pandasppn.org”.

Transfers of Business Assets

In the event PPN goes through a transaction, such as a merger, being acquired by another entity, bankruptcy, or selling all or a portion of its assets, your PII may be part of the business assets transferred. We can provide no assurance that you will be notified in advance of the transfer, if any, of your PII in connection with any such transition or transfer.

Protection of PANDAS Physicians Network and Others

We reserve the right to access, read, preserve, and disclose any information that we reasonably believe is necessary to comply with law or court order; enforce or apply our conditions of use and other agreements; or protect the rights, property, or safety of our Company, employees, users, or others. This includes exchanging information with other companies and organizations for fraud protection and data breach risk reduction.

Aggregate or Anonymous Information

We may share Non-PII with third parties.

With Consent

Except as set forth above, users will be notified when PII may be shared with third parties, and will be able to prevent the sharing of this information.


We take security measures to protect against unauthorized access to or unauthorized alteration, disclosure, or destruction of data. These include secure socket layers, firewalls and encryption, internal reviews of our data collection, storage and processing practices, and security measures, as well as physical security measures to guard against unauthorized access to systems. If we retain PII on our systems, we restrict access to PII to employees, contractors, and agents who need to know that information in order to operate, develop, or improve our Website and Services. These individuals are bound by confidentiality obligations and may be subject to discipline, including termination, if they fail to meet these obligations. However, the internet and mobile web are inherently insecure and so we are unable guarantee that the security measures we take will not be penetrated or compromised or that your information will remain secure under all circumstances. We retain individual records of PII and all Non-PII indefinitely. The records can be obtained by the user by contacting support@pandasppn.org. PII information can be deleted upon request.


You may elect not to provide Web Browsing Data to us or our Service Providers by following the opt-out procedures set forth below, but our Website may not work properly and/or some of our Services.

Learn More about Cookies, Web Beacons, and other Technologies

You can accept or decline cookies. Most browsers automatically accept cookies. To learn more about cookies, including how to refuse cookies on your computer by adjusting web browser settings, follow these links:

Opting Out of our Cookies

To opt-out from collection and use of your Web Browsing Data by the Website, block the use of cookies by changing a setting in your Internet browser.

Social Media

We may engage with you on third party social media sites like Facebook, if you engage with us. By doing so, you “opt in” to sharing your content with us. Be aware that such content (PII, images, captions, and comments, etc.) that you submit (upload, post, comment, share, “like”, etc.) to third party social media sites (including any of our message boards or tweets) is publicly visible, not private and cannot be considered private PII. To manage social media notifications you receive, correct or delete your PII, or adjust your privacy settings, access the profile section of your social media accounts and follow the directions there. To learn more about social media privacy settings, follow these links:

Correcting your Personal Information:

Physician users may access and correct their personal information in their user accounts on the Website. If you have any questions about accessing or updating information we have on file about you, please contact us at support@pandasppn.org.

Your California Privacy Rights:

Under California Civil Code Section 1798.83, California residents who have an established business relationship with us have the right to request that we provide certain information regarding the disclosure of their personal information to third parties for their direct marketing purposes during the immediately preceding calendar year. You may send your request for such information to support@pandasppn.org. Requests shall only be accepted via this email address. We shall not be responsible for requests made over the telephone or by any other means. By using our Website, you signify your consent to the data practices described in this Privacy Policy and agree that your visit and any dispute over privacy is subject to our Terms of Use, including without limitation, provisions regarding limitations on PPN’s liability and application of the laws of the State of North Carolina.