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Privacy Policy

Please take a moment to review DINET’s privacy, data usage, and customer rights information.  For guidelines on the rights and responsibilities of membership on the DINET site, please visit https://www.dinet.org/guidelines 

Cookies and the Collection of Personal Data

By becoming a forum member of this site, you agree to share certain information with us and to allow us to collect certain information from you.  This site uses cookies to distinguish you from other users of this site. This is essential to your user experience. By registering for this site you are agreeing to the use of cookies every time you log in.

A cookie is a file with identifying information sent by a server to a web browser and stored by the user’s browser.  This identifying information (a string of numbers/letters) is sent back to the server every time the browser asks for a page from your site (server).

Cookies do not contain information that can personally identify you, but personal information that we do store about you (IP Address, email, etc.) may be linked to the info we use related to cookies.

DINET uses cookies to authenticate your visit to our site; to identify you and track how you navigate your visit.  Cookies are also used to personalize your visit; logging your preferences & delivering you the best personal experience that we can.  Cookies help provide security on the site so the use of your information cannot be abused.

DINET uses cookies to analyze the way you use the site.  DINET uses Google Analytics for this purpose as well as services provided by our hosting company, Invision Power Services.  Both companies store cookie information related to developing reports related to the way you use the site. Google’s privacy policy can be viewed at https://www.google.com/policies/privacy/   Invision Power Service’s privacy policy may be requested by contacting them directly: https://invisioncommunity.com/contact-us 

Most browsers give you the option of refusing to accept cookies or to delete them.  Each browser has a different way of doing that. To get the latest info about deleting or blocking cookies on your browser, visit the support area of your browser.  Be aware that you may not be able to use the DINET site if you block the cookies. If you elect to block or delete cookies in your browser and then experience technical issues with the site, please be sure to let support know that you have blocked cookies before experiencing the current issue.  

When you register for this site, you supply DINET with your email address, your birthdate and the username you choose.  It is understood by you and agreed to, that we will store this information until you request to be removed from our system.  Please note, you may also register for this site using a Facebook login tool. As Facebook requires the use of your full name, the registration DINET receives will also include your full name.  However, it is not required by DINET for membership. If you would rather select a username to maintain your anonymity, please register directly on the site at https://www.dinet.org/register   If you have already registered using Facebook and would like to remove your name and select a username instead, please contact dinetforums@dinet.org

We also collect other information required for the use of this site and services.  This information may be your IP Address, geographical location, operating system and browser type, along with the date you first registered and last time you visited the site.  We also collect information about the way you use our site. Information such as the length of time on site, the pages you visit, the navigation path you use and how frequently you visit. This information is used solely for the purpose of analyzing the usefulness of our site and services.  

This site allows you to upload content as a part of your membership.  This information may be written content, comments to posts made by others, photos of yourself, photos of your choosing, or participation in surveys, questionnaires or polls. By choosing to upload content, you are agreeing to that content becoming a part of the DINET site.  It is understood that information posted as a part of your membership account will be deleted from our site at the time you no longer wish to be a member. This information is your photo, photos you uploaded, your name, email and other distinguishing analytic user information.  Comments you’ve made to other member’s posts, questionnaires submitted, surveys & polls you’ve responded to or data information you’ve added to the site (physician database info, support group information and medical questions for our Medical Advisory Group) will not be deleted when your membership ends.  By submitting this information, you are agreeing to the information becoming a part of the DINET site.

Processing the Information DINET Collects

When you become a member of DINET, you supply DINET and it’s hosting company, Invision Power Services, with your IP address, username, email address and other identifying information listed above.  This information is processed for the purpose of supplying you with access to our forum and services, as well as communicating with you directly. From time to time, DINET emails our members with information regarding the site, organization, and other health and medical information related to dysautonomia and related disorders.  Quarterly, DINET’s publication, Dysautonomia News, is emailed to our members as well as any Facebook followers who sign up to receive it. Every time DINET emails you for these reasons, information will be included allowing you to opt-out of receiving more notifications. At any time, for any reason, you may stop DINET from emailing you.  This will not stop or cancel your membership to the DINET site. It will only unsubscribe you from our mailing list. If you would like to be removed from the DINET site completely, cancel membership and delete your personal records, you must email webmaster@dinet.org 

Social Media

The collection, processing, and usage of information by Facebook, Twitter, YouTube and any other social media platform is governed by that entities privacy policy.  Please be aware that when you click on a link from our site to another website or social media platform, even when owned by DINET, your information is processed, collected and used by the policies governing that entity.  DINET has no authority over how your information is used by other organizations.

Personal Correspondence

If at any time, you choose to engage in correspondence with DINET staff/volunteers or other DINET members, your email address and the contents of your message will be stored as a part of DINET’s email program files for the express purpose of responding to your message and/or fulfilling a request you have made.  Your information is not stored any longer than the length of the mutual communication.

Sharing your Data with Others

DINET does not share any of your data with any business, organization or entity for commercial, marketing or solicitation purposes.

We disclose your user and usage data to our hosting company, Invision Power Services, for the express purpose of giving you access to the site and services.

We may share your personal data with our insurers and/or professional advisors in only those ways that are necessary for the purpose of maintaining insurance coverage and obtaining professional advice regarding administrative needs.

DINET is an international organization.  Personal content and data that you submit to DINET for publication are available around the world through the web.  We can not prevent the use or misuse of your content by outside parties.

Withdrawal of Consent

The information and resources published on the DINET website are available to the public without any requirement of membership.  However, membership is required for the purpose of content participation (posting, uploading, commenting, etc.) Membership is wholly consensual.

Therefore, by becoming a member of DINET and taking the action of content participation, you are consenting to the collection, processing, and use of your personal information in the ways described in this document.  If at any time, for any reason, you wish to withdraw that consent, you may do so by contacting webmaster@dinet.org  Your account and information, as described above, will be removed from our records and the records of our hosting company, Invision Power Services.  If you do not actively express the desire to have your account removed, it is understood that your information will stay in our records until we choose to delete it.

For more information about any of these guidelines or to learn more about the Dysautonomia Information Network, please visit the About Us page of this site at https://www.dinet.org/aboutus/about-us


Dysautonomia Information Network (DINET), P.O. Box 10057, Swanzey, New Hampshire, 03446

Third Parties

Google Analytics
Google Analytics is a web analysis service provided by Google Inc. (“Google”). Google utilizes the Data collected to track and examine the use of this website, to prepare reports on its activities and share them with other Google services.
Spam Defense
The IPS Spam Defense Service passes the email address and IP address of the registering member to the service to determine the likelihood a registering account is a spam source.
We use the hCaptcha anti-bot service (hereinafter "hCaptcha") on our website. This service is provided by Intuition Machines, Inc., a Delaware US Corporation ("IMI"). hCaptcha is used to check whether the data entered on our website (such as on a login page or contact form) has been entered by a human or by an automated program. To do this, hCaptcha analyzes the behavior of the website or mobile app visitor based on various characteristics. This analysis starts automatically as soon as the website or mobile app visitor enters a part of the website or app with hCaptcha enabled. For the analysis, hCaptcha evaluates various information (e.g. IP address, how long the visitor has been on the website or app, or mouse movements made by the user). The data collected during the analysis will be forwarded to IMI. hCaptcha analysis in the "invisible mode" may take place completely in the background. Website or app visitors are not advised that such an analysis is taking place if the user is not shown a challenge. Data processing is based on Art. 6(1)(f) of the GDPR (DSGVO): the website or mobile app operator has a legitimate interest in protecting its site from abusive automated crawling and spam. IMI acts as a "data processor" acting on behalf of its customers as defined under the GDPR, and a "service provider" for the purposes of the California Consumer Privacy Act (CCPA). For more information about hCaptcha and IMI's privacy policy and terms of use, please visit the following links: https://www.hcaptcha.com/privacy and https://www.hcaptcha.com/terms.
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